Thursday, January 27, 2011

As Precious As Gold

Photo by Jeff Norris
The other night I read my son the book “Wilfrid Gordon McDonald Partridge”, written by Mem Fox and illustrated by Julie Vivas. It is a wonderful book about a young boy who lives next to a nursing home. His parents tell him that is favorite resident in the home, Miss Nancy, has lost her memory. Wilfrid wants to know what a memory is so he asks every one of his friends from the nursing home. Each person has some wisdom to share with him, such as memory is something that makes you cry, something that makes you laugh, and something from long ago. Then Wilfrid goes home and collects items which represent these different elements of memory, such as a puppet that makes him laugh, and seashells from a trip he took long ago. He brings all of these items to Miss Nancy, in the hopes that he has found her memory, and he has. Each item brings memories back to her of stories of her life that she shares with Wilfrid. It is a beautiful book, one to have in your library.

As we were reading the book, my son responded to each of the ways the elders defined memory. He questioned that memories make you cry, but then we talked about how maybe sad memories do make you cry. He agreed that sometimes memories do make you laugh. The last definition of memory was the one he most identified with though.

The last person Wilfrid asks “What’s a memory?” replies “Something as precious as gold. “ to which my son smiled and immediately said, “That is so true!”

I was struck by the fact that my son defines memory as more than the basic definition of  its as an event that you remember, but instead understood how valuable memories are to a person. How did he come to this understanding? Is it because his mother takes pictures of and scrapbooks just about everything? Is it because he lives with his grandmother who is losing her memories? I am sure he sees how hard it is for her. Is it because he knows she values him as being as precious as gold and never wants to lose her memory of him?

I don’t know exactly why or how he can understand at the center of his being that memories are as precious as gold, but I am glad that he does. He continues to amaze me with his insights about life.


Rev. Katie

Wednesday, January 26, 2011

Reading Together

Mom & Jeffrey reading his video game
My son has always loved for us to read to him, we spend at least a half hour or more reading to him every night. He has not been as enthusiastic about reading on his own though. Fortunately, or maybe unfortunately, video games have helped with this. He just got a new Kingdom Hearts game and there is a lot of reading in it because much of the game is a story.

This evening, Mom was helping Jeffrey read the story on his game. With four adults in the house, it is nice to be able to work as a family to care for each other. While the rest of us were busy cleaning up from dinner, Mom was able to be there for Jeffrey and help him read.

Many of us assume that there is a gap in the generations, thinking that a seventy-three year old woman can’t communicate with a six year old boy around a video game, but they were able to. It was also interesting to see how Mom helped Jeffrey have more patience and gain confidence is his reading ability. He can get a bit frustrated with reading and if he can’t read the word right away, he asks us for help. The words on the screen were very small and Mom has some difficulty with her eyes, so it took her longer to read the words. This slowed Jeffrey down and he was able to read more complex words by going at Mom’s pace.

It is always amazing to me how simple things in every day life provide such learning and create bonding of relationships when we take the time to do them together.


Rev. Katie

Sunday, January 23, 2011

Thankful for My Dad, Husband, and Son

I am currently reading The Shriver Report: A Woman’s Nation Takes on Alzheimer’s which is a study by Maria Shriver and the Alzheimer’s Association. It is a wonderful study and an invaluable read. I am sure I will have many reflections on it in the future.

The Shriver Report focuses on women because 65% of Alzheimer’s patients are female, and 60% of caregivers are women. In the introduction to the study, John Podesta, President and Chief Executive Officer of the Center for American Progress says: “The vast majority of caretakers in America are women; often, they bear primary responsibility for raising the next generation as they care for the last. But for the first time in American history, women now also make up half the work force, and two-thirds of all mothers are primary or co-breadwinners in their families. With American women juggling so many responsibilities already, caring for a loved one with Alzheimer’s disease can become a Herculean challenge.”

I want to mention that I have not finished the report yet, but so far I realize this does not address same-sex couples. There are many questions about gender roles that come up for me in reading this report as well. I am also not sure how representative the study is of different economic statuses. They do represent different cultures in the study.  So, I realize there are many questions of gender, sexual-orientation, class, and culture that we need to be asking. This is a wonderful study from the perspective it was written from and for now I just wanted to reflect on one of the things it has personally made me thankful for. 

My son, me, and my dad
I am thankful for the outlook that the men in my life have on family, gender roles, and caregiving. My Dad is committed to care for my Mom and does not leave caregiving to his female children, as many men do. He sees it as an honor to care for Mom. I love the way he sees this as a group effort which we all do together.

Many people assume that I care for Mom more than my husband does, thinking we fall into those gender roles. However, my husband helps out just as much, and sometimes more, than I do. He too sees this as something we all do together. As often as possible, he also tries to structure his job in a way that helps me care for Mom and have a job I love.

My son is learning, from his two male role models, that we all help care for each other. There is no idea that one gender does certain tasks and the other gender does other things. We all contribute in ways that align with our inherent gifts. It amazes me the ways in which my son notices when Mom needs something or knows how to get her to have fun when she is sad.
My dad and my husband

And all three of them, my dad, husband, and son, fully support me in my work as well. They work around the nighttime meetings of ministry and the fact that I work on the weekends. Never once have they said or implied that as a woman, my work comes second and I should be the one to be there to care for either Mom or my son. I often chose to have a more flexible schedule to be there for family, but that is my choice, not a pressure.

There are many pressures from society about what being a woman is and means, especially in terms of family and caring for our older generation. I am grateful that in my family, instead of Alzheimer’s being a woman’s issue, it is a family issue.


Rev. Katie

Friday, January 21, 2011

Giving Dementia Patients What They Want

I try to read articles and books with suggestions that we give people with dementia or Alzheimer’s what they want with an open mind. I am not a doctor, I don’t run a nursing home, and I am not an expert in dementia. All I know is that we live with it every day and in our experience, this information presented to the public without added research and explanation, can be harmful.

For instance, the New York Times article, Giving Alzheimer’s Patients What They Want, Even Chocolate, has caused more harm than good in our home. The good was that it reminded me that some of the things Mom does are coping mechanisms. If she wants to wash one or two pairs of pants at a time over and over again, and she has the energy to do so on that day, we should let her do it because it brings her comfort. The article also shows some amazingly innovative and more caring ways to deal with dementia. However, other parts of the article were less helpful.

The article talks about letting patients eat whatever they want and shower at 3am if they want. What the public does not realize in reading these articles is that this is a care facility, not a home, where it is someone’s job to be awake at 3am. They come in for the night shift, they have not already cared all day for someone. And for nutrition, they do not address if these people, in addition to the chocolate, also eat well balanced meals. They also do not go into what happens when someone refuses to eat nutritious food. Where all they want to eat is chocolate Special K, hot dogs and candy. When that makes them sick, what do you do? What happens when the person sits in bed all day, never getting any exercise because they don’t want to do it? Their muscles weaken and they can barely hold up the weight of their skeletal system. What do we do then? What do we do when Mom won’t go out and get’s depressed because she has not seen her friends and had any fun?

In our home care experience, we can’t just let Mom eat whatever she wants, not exercise, and stay in bed all day. Yet others who read article’s like this one tell us “The article says it’s ok, that’s what you should do.” Some people think we are being mean to Mom by trying to get her to eat well and exercise when she does not want to do it. Mom reads these articles and hears the speakers mention this type of care, and even she says that since these “experts” say it’s ok, we should let her do whatever she wants.

But, it is not ok. Mom does not deserve a life where she is uncomfortable and sick all the time because she does not take care of herself. And in reality, it is us, those who care for Mom, who are responsible for the ramifications of letting Mom do whatever she wants. We will be the ones to carry her in and out of bed when she can’t lift her own body. We will be the ones to wash and bath her. We are the ones that have to take care of the many things that happen when she gets sick. Clearly we are willing to do all of those things, but we don’t want to make it happen faster than it needs to. And the psychological and physical pain all this causes Mom is immense, she should not have to live that way.

I don’t know how to tell people this, but unless you live with a person with dementia every day, not for a week or two, but 24/7, you will not understand the ramifications of things that seem so insignificant. Cereal for dinner on one day seems harmless, but when a person eats unhealthy all week, they get sick. Missing exercise one day seems fine, but not when someone has not really been active for a long time and looses muscle mass. An alcoholic “nip at night,” as the article mentions, is fine unless it increases hallucinations.

All I ask is please, if you write such articles or present this information, please think about the people who do home care. Please think of how the generality of the information leads people to make sweeping assumptions that this kind of care works for everyone in all situations. And if you read this kind of information, first, thank you for caring enough about dementia to gain more knowledge about it. Second, please remember that this information does not work for everyone. The disease affects everyone differently and home care is much different than institutional care.


Rev. Katie

Saturday, January 15, 2011

Forgetting the Hat

The Silly Hat
It was “silly hat day” at my son’s school on Friday. He wore a great hat we bought in New Orleans full of bright colors and bells. It was sitting on the counter and Mom asked about the hat. She put it on and we laughed about how great it looked on her. Then she walked over to get something from the pantry, turned around and said “Who’s hat is this?” And we explained it all again.

Mom has not been at the stage where her short term memory has been a problem very often. In fact, this was the first time it was glaringly obvious that her dementia is entering a stage we have not been in yet. If she has forgotten things before, when we tell her again, she often remembers our original conversation. Not so this time, the hat was completely new to her.

Over the past few weeks, I have noticed things getting much worse for Mom. One of the hard things about this illness is just when you have started to process and deal with the severity of it, it changes. I had a good amount of education around grief and loss in seminary and in my chaplaincy training. Much of that talks about the stages of grief, such as denial, anger, bargaining, depression, and acceptance. The stages sometimes occur in that order or not, they may overlap, and sometimes you are in one stage for much longer than another, but in general it is a process. In the case of dementia though, the grief just keeps happening over and over again. And then sometimes for a short while you get back what you lost, just to lose it all again.


Rev. Katie

Tuesday, January 11, 2011

Playing Games Together

Photo by Jeff Norris

One of the challenges in our house is figuring out a way that Mom and our son Jeffrey can spend time together. Jeffrey is a high energy six year old who loves to run around and play games. While he also loves to watch TV with Mom, the amount of their TV watching was getting a bit excessive. So the other day, Jeffrey brought in a game to play with me and Mom. The game for this day was Zingo, which is described by the manufacturer in this way: “In this fast-paced, energetic variant of Bingo, kids get a kick out of pulling the Zinger forward to reveal two mystery tiles, and then try to be the first to call out the tiles that match the images on their cards. The first player to fill his or her card wins by yelling ‘Zingo.’” (As a side note, ThinkFun makes amazing games for all different ages and difficulty levels.)

I thought this would be an easy game to play with Mom, but even this proved to be a challenge. When you slide the “zinger” and the tiles come out, you have to quickly look at the tiles and your zingo board and see if you have a match. Jeffrey was far too quick and would always get the tiles before Mom even had a chance to look at them. And eventually, to help Mom, he would look at the tiles for her and give her a tile if it matched her board. That was sweet of him, but it did not let Mom really play the game. I explained to Jeffrey that we needed to wait to take a tile until Mom had a chance to look at them, and he tried to do that. It was difficult for him though because most games, like this one, are set up for competition. It is hard to re-teach our children that sometimes you play a game not to win, but to include everyone, so that means you may have to alter how you play. Much of living with someone with dementia, and I am sure many other illnesses or disabilities, means we need to live counter to our culture of everything being competitive and fast paced.

We had a good time playing, and everything went well, the experience just made me realize how hard it is to do even simple things when you have a group of people with varying abilities. How can we best include everyone, yet still make what we are doing fun and engaging? I think I will try puzzles next time; non-competitive, but something we can all do together.

Do any of you have games or activities that the children in your life do with you, if you have dementia, or with your loved one with dementia?


Rev. Katie

Thursday, January 6, 2011

No Words

I cried when I read the article, Dinners in the Dementia Ward, about a family that brings family dinners to their loved one who is now living in a dementia ward. Much of the article reminds me of Mom and my family. The dinner table has been, and still is, a focal part of our family life. The dinner table is where Mom shone each night, creating amazing food for her many children, their spouses, and her grandchildren. This article reminded me of why it is so important for us to keep up dinner as a family, because it brings so much not only to us, but to Mom as well.

Mostly though I think this article hit on one of the reason’s I have not written a blog post in a while. Sure, much of that is because the holiday season is hectic and I have not had much time to sit an reflect. However, part of it is because I did not know how to write about how difficult the holidays are for me.

The article says of their family dinners: “Every meeting, even at the best of times, involves a calculation of this week’s loss – another level of immobility, another few words of vocabulary disappearing, groped after for a while and then waved away as irretrievable.” For me, every holiday involves a calculation of the year’s loss. I admit that from day to day I try not to notice the abilities Mom is losing, and I try to focus on what we still have. At the holidays though, when we are in Mom’s world, attempting to create what Mom does best, I can’t ignore the loss. I don’t think Mom can either.

There are no words to describe how it feels to watch someone lose who they are, their ability and their memories, which is probably why I could not think of anything to write. It is sad, scary, and heart wrenching really. It is some of the worst emotional pain you may ever feel.

In the midst all that sadness, I have a profound sense of gratitude that none of us in this house have to feel this way alone. It is a blessing to be together.


Rev. Katie