Hope

Me & Mom. Photo by Jeff Norris

Hope: the feeling that what is wanted can be had or that events will turn out for the best.

The other day I told Mom I was going to a meeting for the annual Celebration of Hope fundraiser for the Cleveland Chapter of the Alzheimer’s Association. Mom looked at me and asked, “Hope?” She sounded so shocked by what I said that I thought she had misheard me and was trying to confirm that I said “hope” and not a random bad word or something. I said “Yes, Celebration of Hope.”

She looked at me and replied, “There is no hope.”

This was the first time I had ever heard Mom say there was no hope. I was suddenly filled with the realization that Mom does not believe she will get what she wants or things will turn out for the best.

People who go through terrible illnesses or traumatic events often say that hope is the thing that sustained them. For many people hope is the reason they are alive. It is what saves them. One could argue that in terrible situations, we need hope, for without it we would perish. I guess in this situation you could say we could redefine hope, or see the other areas in life where Mom has hope.

There is hope in Mom’s time with family, in the fun of specific events that are coming up, and in watching her grandchildren grow. But if we are just talking about hope for her dementia being cured, which is the thing she most wants, she is right, there is no hope.

As a minister I want an answer for her. I can easily imagine a congregant in a similar situation coming to me, asking what to do when hope is lost. Initially I would feel compelled to list all of the other ways in which this person still has hope and a beautiful life ahead of them.

However, actually living in this situation and knowing there is no hope for a cure for Mom, I feel like to try and convince her to see hope in other areas, as though that makes up for the fact that there is no hope for a cure, is the wrong thing to do. There are things we can not change. There are some things for which there is no hope. To deny that reality would be to deny her experience and the grief that comes with it.

We all need to grieve the loss of hope for a cure for Mom because denial makes us attached to an outcome which will never happen. It will not allow us to deal with the reality of the situation.

I am not saying there are not many other wonderful things in Mom’s life that we celebrate, and she celebrates as well. Sometimes though we need to recognize the reality of the situation so we can truly deal with what is in front of us.

Blessings,

Rev. Katie

Passing on Tradition

Every year for Christmas, Mom used to make Sugar Cookies, Gingerbread Cookies, Chocolate Spritz, Press Out Cookies, Kolacki, Almond Cookies, Fruit Cake (which she and my sister made this year), Plum Pudding, and chocolate covered fruit. She was baking for weeks.

We started the annual cookie baking process today at 9:30am this morning with the Sugar Cut Outs and Gingerbread. Things were going smoothly until we ran out of cinnamon. Dad went out to the store and bought everything on the list, except I forgot to write cinnamon on the list. He had to go out again, in the holiday shopping traffic, for cinnamon. I have cut out over 200 cookies from 10am to 7:30pm. I don’t want to cut out another cookie until the traditional Easter sugar cookies. Per tradition, this week all the local kids and grandkids will come over to decorate these hundreds of cookies.

Every Christmas since my son was born, I have made these two same types of cookies with him. Today I loved watching him bake with Mom and see how, at six years old, he knows how to properly measure flour. He knows not to over handle the cookie dough. He knows the tricks for ensuring the gingerbread dough does not stick to the counter, cookie cutters, or roller. He is learning all of the things I learned from my Mom at his age.

These are the only two types of cookies we will make this year because it is just too hard to make all of the things Mom used to.  It is hard when a loved one gets dementia or for any reason can not carry on many of the family traditions. The loss of tradition reminds you of what you have lost. We may feel a lot of pressure to try and carry out all of the traditions exactly like our loved one used to. However, that can be much too daunting for many of us. I noticed this year though that we do not need to make all the different kinds of cookies Mom used to make. We were able to pick what was most important to us traditionally, and what we want to pass on to future generations.

The best part of today was that we all spent the day together, laughing at the cinnamon mistake, and carrying on a family tradition.

Blessings,

Rev. Katie

A Different Perspective

One of the porcelain dolls Mom has made.

On Black Friday, in order to spend time together rather than fall into the shopping frenzy, all five of us went to Artist for a Day, where you paint your own pottery. The last time we took Mom there, she did not paint anything because she thought she would not be able to paint well with her hand tremors and trouble concentrating. However, she has been doing some painting at the local senior center and she said she would paint this time. I was very excited because I love to do things like this, and I especially like to go with Mom because she and I used to go to places like this every once in a while.

When we got there, Mom picked out a ring and jewelry holder to paint for my sister. The paint she picked was three different shades of rose, because my sister loves roses, and Mom wanted the paint to fade from dark to light. I thought this would be a fairly doable project as there was no detailed painting. However, this proved to be a bit too confusing. Mom could not remember where each color was supposed to go, or  how to carry out her vision of the fading paint colors. I tried to help by checking in with her on how she was doing. I also traced the outline of the piece on paper and set the ring holder on top of it. I highlighted the three sections and numbered each color to show Mom which part of the ring holder should be painted with what color, to get the shading effect. However, it was still a bit to hard for her. What she ended up doing was not what she envisioned, but it still turned out beautiful.

While we were painting, I really wished there was a way I could help her better. I felt bad that I could not figure out how to make it easier for her. I was also saddened by the fact that while my Mom used to paint the detailed, beautiful faces on porcelain dolls she used to make, that this was so hard for her now. It was great fun to be together and work on our projects, but I felt a bit sad at what Mom has lost the ability to do.

When my Mom gave the ring holder to my sister, she was so happy. She mentioned to Mom that there still are things she can do, she has not lost her ability to do things she loves. My sister mentioned that painting things like this is something Mom could do as gifts for us kids and her grand kids if she wanted to.

I was grateful for my sister’s different perspective than the one I had. I loved that Mom could still paint, but I was focusing too much on the abilities Mom had lost. I was focusing too much on the difference between the detailed faces of the porcelain dolls and the more free-form art of the ring holder. Living with Mom every day, I see so many things that are different than before. So many things she can no longer do, and that makes me sad and scared. I am scared about what will happen in the future. Will Mom forget us? How bad will her dementia get?

My sister, on the other hand, was able to see what Mom can still do. Her perspective made things less scary. It was easier for me to appreciate what we still have instead of worrying about what else we might loose as Mom’s dementia progresses.

It is helpful to have different perspectives when dealing with dementia because it is easy to get caught up in either denying that it exists, or being terrified of what the future holds.

Blessings,

Rev. Katie

The Dreaded Calendar

I think I have come to hate our calendar. This thing, which is supposed to create organization and a sense of order, creates stress and chaos in our house. I would love to throw it out, but that would make Mom even more confused, and we would miss all our appointments.

The calendar has brought to light a new dimension of dementia that I did not expect, don’t understand, and can not think of a way to fix or help.

Typically when you schedule something to do, a friend says “Are you free Monday the 13th at 3pm?” You check your calendar, if it is free, you say, “Yes, I am free, let me write that down.” Then another person says, “Would you like to have dinner Monday night the 20th at 6pm?” You check your calendar and you are free so you schedule it in.

However, what Mom remembers of such conversations are that these events were both on a Monday. She assumes they are both on the same Monday and somehow they are both at the same time. Or if there are two events in one day, let’s say one at 10am and the other at 6pm, she thinks the two events conflict and she can not go to one of them. We write down the times on the calendar, we explain the events are on different days, and we show her that, but it just does not make sense in her mind. She spends sometimes an hour or more per day looking at the calendar trying to figure it out. She talks to us often about the schedule and it still does not make sense to her.

We have told her we will get here where she needs to go and make sure we do not schedule two events at the same time. The problem is she does not believe us and does not trust that we are correct. That is why taking the calendar away would make her even more anxious because she is unable to believe what we say. This does not mean Mom does not trust us personally or thinks we are trying to trick her. I can see clearly that she does trust us, yet at the same time can not believe us. He mind does not allow her to do so. It is a very difficult dynamic and I can not figure out how to fix it. This makes her very anxious and stressed and I know she wishes we could fix it for her. We wish we could fix it for her too.

The issue over the calendar is one of those things where I think we just have to watch Mom be upset because there is nothing we can do about it. Mom’s mind is not working in such a way where scheduling is something she can understand.

I have to admit defeat to the calendar.

Blessings,

Rev. Katie

What Could Be Better?

One of the best things about living in a multigenerational household is the everyday, yet special interactions my son gets to have with his grandparents. There clearly is a role they play in his formation that is a role neither my husband or I can fill. Sometimes the things that one of my parents is able to do with Jeffrey that Jeff and I are not particularly good at seem simple, but they are very important to Jeffrey.

For example, my son loves football. Now, in high school, I went to every high school football game for St. Edward’s so one would think that I would at least know something about football, or like the sport. However, I never actually paid attention to what happened in a game. I was in the Flag Corps and so I spent each game hanging around  with my friends and performing at half time. My husband and I take our son to football games, but we would be happy leaving after the half time show, while Jeffrey wants to stay for the whole game. He watches attentively, jumps up and down in excitement, and talks about what is going on in the game.

This past Sunday morning Jeffrey came up to me and said “Papa and I are going to watch the Brown’s game together today, so we need to be home from church by 1:00.” 

Papa & Jeffrey watching the game.

We got home from church, Dad made some popcorn and as Jeffrey snuggled up with Dad on the couch, I heard him say “What could be better than popcorn and a football game?”

They sat there most of the afternoon together and watched the game, they talked about football strategy, and Dad even taught Jeffrey a meditative art practice that he loves to do now.

Our kids have their own personality, their own interests and talents, which sometimes are not things that we as their parents like or are any good at. While we try to do these things with our kids because we know they love it, they just don’t feel the excitement and interest from us as they do from someone else who likes the same thing. It was a blessing and a gift Dad gave Jeffrey by sharing special time with him, and encouraging his love for something important to him. It was also a gift to us as parents who wish we could be the perfect parents but know there are some roles we can not fill for Jeffrey. I believe a child is happier and better able to follow their dreams if they have different mentors and guides in their life who can teach them new things and support them in what they love.

Both Mom and Dad support Jeffrey in what he cares about and they bring new things into his life that we never thought of. If we did not live in the same house, things like this would not happen. Even if we lived down the street, I do not think my parents would know Jeffrey enough to be able to interact with him in this way. Last year in school, Jeffrey drew a picture of his family. He drew all five of us, Beep (what the kids call my mom), Papa, Jeffrey, Mommy & Daddy. I am glad this is the way he sees his family.

The Knitting Gauge

In knitting, before you start any project, you knit a gauge. The gauge is a small square of fabric you knit in the pattern of the project to make sure that you are using the right size yarn and needles so your project comes out the right size. You should never knit anything without first knitting a gauge. For those of us who have tried to skip knitting a gauge, we know that most of those projects never turned out right in the end.

In knitting you use a gauge to predict what will become of what you are making. In life I see knitting as a gauge for Mom’s illness. I was able to go knitting again with Mom a few weeks ago and it reminded me of how as her dementia and Parkinson’s has increased, her ability to knit has decreased. 

Mom is really no longer able to knit because the patterns are too confusing, even making a stitch is confusing, and her hands shake too much to hold the needles well. However, her wonderful friends don’t mind. They welcome Mom just the same as always and it does not matter to them that she has taken out the same ball of yarn and needles for months and never really used them. They are an amazing group of women, fittingly called the “Cultured Purls.” (Purl is a term for a specific stitch in knitting.)

Jeffrey, his Bakugan "Dragonoid", and me with our blankets.

Mom made me a blanket in about eighth grade, and I took it to the group to be repaired because it has a hole in it. This blanket and the one she made my son remind me of what Mom used to be able to do and they show how her abilities have changed so much over the years. Just three years ago she was still able to knit a blanket, even if it took much longer than it used to. A year ago she was at least able to slowly knit something small like a scarf. For months now she has not knit a row of fabric.

While Mom’s ability to knit has been a gauge of her progression, the knitting group and Mom’s knitted items that we have are a gauge for how we care for one another. The knitters always welcome and help Mom and love her at every stage of her life. The gauge of their love for her is never ending. The blankets my son and I have are everlasting reminders of Mom and how much she loves us, which too is never ending.

I think it is important for us to remember that even if our abilities change, our love for each other still exists. For the person with dementia, Parkinson’s, or any other illness, it means you can still be part of many of the groups you were in before, even if you can no longer participate in the activity. For those of us who are their friends and loved ones, it means we can always remember to welcome them at whatever stage they are at. And lastly, don’t forget to document, through pictures and/or journaling, the memories of the time you have together. At times those “hard copies” of the memories may be very comforting to us all.

Blessings,

Rev. Katie

A Bit More Clarity

Mom and Dad went to see her doctor today. We are continually struggling with the fact that there is no one, clear diagnosis for Mom. It is important to understand that there is no definitive pathological test to diagnose Alzheimer’s Disease, Parkinson’s disease or most of the other things that cause dementia. The only way to know for sure what someone has it by looking at the brian postmortem.

Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.

In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.

We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it. 

As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.

Blessings,

Rev. Katie

Cooking Lessons

Our Thanksgiving Stuffing

For fifty years, Mom was the one who handled all of the cooking and all of the holiday preparations. She is the only person I know who can make a Thanksgiving dinner for thirty people, on her own, and have everything done to perfection and on the table at the exact same time. However, over the past three years, that has changed, and now Dad does all of the cooking and family helps out on holidays.

Mom still loves to cook though, so around the holidays we try to make sure she can make some of the things she likes. My sister has been having her over for a few weekends to bake the Thanksgiving bread together. Today Mom and Dad were cooking the stuffing together, and lets just say it was an experience.

When Mom works with my sister, all goes well. My sister is very patient, writes out everything step-by-step, works slow, is organized, and never looses her temper with Mom. She knows the correct way to help allow Mom be engaged and still do things she loves.

On the other hand, my Dad and I are the opposite of my sister. We have much less patience, less organization, and we work faster. When Mom is subjected to cooking with either one of us, it can be stressful at times. This is something we keep working on and we are glad my sister can give us a good example to follow. My first cooking lesson to help people with dementia to slow down, be organized, and be patient. 

Besides the pace and style of working together, I learned another lesson of how dementia makes it a bit harder to cook with Mom.

Following recipes has become very hard for Mom. When we have recipes that are short and well laid out, that is a big help. However the stuffing recipe today had two recipes on the back of the package and conversions based on how many servings you need to make. Not really an easy recipe to follow.

So today Dad was trying to follow the recipe, Mom was telling him he was doing it wrong, he was telling her she was doing it wrong, and I was just watching.

What we finally realized was Mom has made the same stuffing, from the same package, for fifty years, but she did not follow the recipe as it is written on the back. We did not figure out until a while into the process that Mom was not confused at all. She was remembering what she used to do and that is why the recipe did not make sense to her.

There have been other times while cooking when Mom was not remembering correctly and she would make a recipe wrong by following what she thought was right rather than following the recipe. Today was not one of those times though. How do we know when the dementia is causing a problem, or when she really remembers what she used to do if all we have is a recipe that we are supposed to follow?

My second lesson in cooking with a person with dementia is not to always assume they are wrong, even if they are not following the recipe as written.

We feel bad that the experience was stressful for both Mom and Dad today, although now we are all laughing about it. I have a feeling there will be many times like this to come in the future but hopefully our humor will outweigh the stress.

Blessings,
Rev. Katie

Bloggers Make a Difference

I have to admit, I never really paid much attention to blogs until I started thinking about writing one a year ago. Since that time I have found many wonderful resources on all different topics from bloggers all over the world. Since starting my blog, I have come in contact with many different people and it seems like I keep coming across others who are doing things to help in the cause of dementia and Alzheimer’s. Sometimes I find these people in unexpected places.

Those of you who know me know I have a thing for makeup, particularly bold colored eyeshadow. On a beauty blog which reviews such makeup (Phyrra.net), I clicked on a link to the jewelry Phyrra was wearing. Looking through the Etsy shop, I found “Wear the Lilac for Alzheimer's” jewelry.

I think it is amazing the ways people use their gifts and talents to help with a cause they feel called to support. I contacted Kelly of Whimsy Beading to find out how she thought of this fundraiser and why she is doing it. I discovered she was inspired by an author, Terry Pratchett, who announced he had early onset Alzheimer’s.

Wear the Lilac Necklace, photo from Whimsy Beading

Here is Kelly’s story of why she makes her beautiful lilac jewelry of which she donates the proceeds to the Alzheimer’s Association and the Alzheimer’s Research Trust in the UK:

“The Wear the Lilac for Alzheimer's fundraiser started in 2008, not long after Sir Terry Pratchett's announcement in March of that year that he had donated 1 million USD to the Alzheimer's Research Trust UK.

Before then, like many of Pratchett’s fans, I "wore the lilac" on May 25th as a reference to the events in the novel Night Watch. Lilacs are not common in my part of the US on May 25th, it's too hot for them to bloom. So, I started making lilac pins out of silk lilac blooms for myself and other local fans and giving them away.

After hearing of Sir Terry's donation, I wanted to do more than that. So I approached some of my online fan communities and asked if they would be interested in purchasing a lilac pin if they knew the entire proceeds of the sale would be donated to Alzheimer's research both in the US and in the UK. The fandom's reaction was very positive and so I set up the Wear the Lilac for Alzheimer's page on my paid photo hosting site.

In the first year, Wear the Lilac for Alzheimer's donated over $1,000 to the Alzheimer's Association and the Alzheimer's Research Trust UK. The next year, another $350.00 was raised. This year on May 25th 2010, $770.00 was donated and we will make a donation each May 25th thereafter.

I don't lay claim to being the first person to "wear the lilac." That honor is Sir Terry's alone. I also don't lay claim to being the only person to associate the two events - wearing a lilac blossom/clothing and showing support for Alzheimer's research. But I do lay claim to starting the Wear the Lilac for Alzheimer's fundraiser and being at the start of the "grassroots fan campaign" that hopefully has helped those suffering from Alzheimer's and their loved ones.

On a personal note, Alzheimer's has touched my life as well. At the first of this month, I lost my beloved "adopted" grandmother, a woman who has been a large part of my life to a combination of mid-stage Alzheimer's and stomach cancer. So, the work that Wear the Lilac does is in honor of not just Sir Terry (who I could never honor enough if I tried) but her.

In 2009, we made a one-off necklace to raise more funds. In 2010, I started selling the current line of "Wear the Lilac" jewelry as well as the lilac pins. I also started donating part of the proceeds from other Discworld inspired jewelry from our shop to the Wear the Lilac fundraiser.

So far, $2,200 has been raised by the Wear the Lilac charity items. Considering that it's done with a maximum of two people involved, that's pretty good. Not anywhere near a million USD, but we do what we can.”

Trevor Project Necklace, photo from Whimsy Beading

I also want to mention that she has items to support The Trevor Project which works to end suicide among LGBTQ youth by providing life-saving and life-affirming resources such as a suicide hotline for gay and questioning youth.

I will be supporting Kelly's efforts in donating to these two causes which are so important to me. 

I am seeing how the blogging community can make a difference, especially if we work together to support each other’s efforts.

If any of you know others who have fundraising or other projects going on for Alzheimer's disease, dementia, or Parkinson's disease, please let me know!

Blessings,

Rev. Katie

Dementia Is Hardest On...

Today Mom mentioned in one of our conversations, “People always say Alzheimer’s is hardest on the caregiver.” In that moment, I realized just what this often quoted statement might mean to the person with dementia. We were in the middle of talking about how often caregivers speak for their loved one and how infrequently we actually hear from the person with dementia. We said we need more support for the actual patient, and Mom came out with the statement above. I felt like Mom was minimizing how bad this disease is for her because she was taught to do so.

In my experience there are a whole lot of books and support groups for caregivers of people with Alzheimer’s and dementia, but often the actual person with dementia is left out. I hear the quote Mom said at least a few times a month. I rarely hear people say how hard this disease is on the actual person who has it.

Yes, dementia is hard on the caregiver, there is no denying that. I just worry when we focus so much on the caregiving side that we are giving the impression to our loved one that their suffering does not matter. For some this statement may also make them feel guilty, as if they are a burden on their caregivers. I don’t want Mom to have the impression that she is a burden or that her experience of how difficult this disease is is not valid. I actually felt ashamed that Mom so readily repeated this statement. Of all things I want her to remember, that statement is not my first choice.

Being a caregiver is hard now and will only get worse. However, the disease is very hard on Mom too. I can see how hard it is for her. How she is scared of the future and the fact that one day she may not know who her children or husband are. How she feels as of her life has lost it’s purpose because she is so limited in her abilities. This is the one illness she was most afraid to get because she lost her mother to Alzheimer’s. This, in many ways, is Mom’s worst nightmare become reality.

I don’t want to compare who Alzheimer’s/dementia is hardest on. It is hard on us all in different ways.

Blessings,

Rev. Katie

Knowing You Don't Know

Mom’s memory is getting worse and she is becoming more confused. Mom again today was looking for her porcelain dolls, which are at her friends house and have been there for weeks. However today Mom was sure that the dolls were still at home and we needed to take them over to her friend. Both Dad and I told her numerous times that the dolls are not here and her friend has them. Mom looks at us, confused, and says “Why can’t I figure this out?”

It is hard to watch her go through this because Mom knows she can not remember, she knows she can not understand. She will repeat back to you what you just said and yet the reality of the situation does not make sense to her. She says yes, the dolls are at her friends house, and we have to get the dolls out of the basement and take them to her friend.

This middle stage where the person with dementia knows they can’t remember is hard because you see in their eyes how much they want to remember and how frustrating it is for them to know their mind is not correct but there is nothing they can do about it.

We knew this would happen, this is the way the disease progresses. But you do not really know what it is like until you get there. In fact, when I go back and read this blog post, I realize it does not quite make sense. What actually happens to the mind with dementia is hard to explain and unless you have experienced it, you might not quite get what I am describing. It is a combination of not knowing and knowing that you don’t know. You understand that you do not understand. Mom says though that knowing she does not know something allows her to hang on to the rest of the world. In a way it is comforting to her because it shows that she still has a grasp on reality in some way.

I can see the many challenges that Mom’s worsening dementia will bring to her individually and our family as a whole and I wonder how we will handle it. Will we have the patience, the time, and the emotional strength to care for her? How will she take it when she loses this grasp she has on reality and no longer knows she does not know? There are a lot of unanswered questions in our future.

Blessings,

Rev. Katie

Lessons from "Dollhouse"

My husband and I have just finished watching both seasons of Joss Whedon’s television show “Dollhouse,” which got me thinking about how we value our memories and the fear we hold around losing them.

Dollhouse is a science fiction show about people who volunteer (for vast amounts of money) to have their memories and personality wiped away by the Rossum Corporation. After they are wiped clean, Rossum can then program them to be anything someone wants. They are able to rent these “dolls” out to wealthy clients to accomplish various assignments. When the dolls are not imprinted with memories, they walk around in a trance. After five years, their original memories are put back and they go on with their life. However, things go horribly wrong, the dolls are exploited, and the world is on the brink of collapse. The ultimate salvation in this show is to give everyone back their own memories.

The aspects of the show that were interesting from the standpoint of dementia is that the worst thing which happens to the people in the show is the exact same thing which happens with dementia. You lose your memories, and often become someone else. People’s personalities change with this disease. You may never really recognize your loved one again because they no longer act the way they used to. And eventually they end up in a “doll state” wandering aimlessly around with a blank stare. The salvation from this disease would be to get your memories back.

We can enter a world of science fiction where people’s minds are wiped clean and we hope for these people to get their memories back. We know how frightening it must be to lose everything about who you are and we think no one should have to endure that. But we do not often understand that something very similar is happening in reality every day.

It is argued in the show that the “dolls” have no idea who they are or what they lost, therefore this mind wiping is not unethical because it does not hurt them physically or emotionally. With no memories, they don’t miss what they once had. People make the same argument about advanced Alzheimer’s patients as well, that they have no idea what they have lost so they feel no grief or pain at what is going on and who they have become. I believe by making such an assumption we are minimizing and not understanding the severity of this disease. We do not know if dementia patients really have no idea what they have lost. In fact, in the television show the whole plot revolves around a few dolls, one in particular, who do remember little snippets of who they were. They know they have lost something they once had and this is profoundly agonizing for them. They can’t vocalize what they have lost, but they know something is wrong and they want to remember. How do we know this is not what advanced dementia is like?

This show, to me, represents the ultimate fear of dementia, that we are trapped in our own bodies, not really knowing who we are but feeling intense terror and grief at what we know we are missing but cannot name.

I know we do not want to describe the disease in that way, but I also know this is what many people with dementia fear the most.

Blessings,

Rev. Katie

What Will It Take?

The Alzheimer's Association Logo

What will it take for Alzheimer’s and dementia to get the attention it needs? What will it take to raise awareness and obtain funding? What will it take for purple to represent November like pink represents October for breast cancer month?

My family and I went to a program put on by The Daughter’s Club of the Alzheimer’s Association Cleveland Area Chapter tonight entitled “A Nation Responds to the Alzheimer’s Crisis.” This was a great program with speaker Robert J. Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. He gave a compelling and easy to understand talk about how Alzheimer’s is a national crisis and the things we need to do to combat it. He had many great points this evening, and there are a few I would like to highlight.

First he said that we have, for too long, talked around Alzheimer’s and what the disease is like instead of being honest about what happens. He said, “Alzheimer’s disease incapacitates and then it kills.” Until people start to know the severity of the disease, they will not want to work for a cure.

He also talked about how by 2050, because of the Baby Boomer generation, Alzheimer’s disease will increase substantially. (for facts and figures, see my previous post The Future of Alzheimer’s). But, what really hit home for me is that for every one of us, if we live to be 85 years or older, we have, on average, a 42% chance of getting Alzheimer’s. That is if you have no preexisting indicators for the disease then the percentage goes up. This is a disease that affects almost half of the population who lives to be 85 or older. Do people understand that every single one of us, after age 85, has a 42% chance of getting this disease? That is a huge risk, and many of us are living well into our late 80’s.

We also saw statistics for the death rates of different diseases from 2000-2007. Death from HIV has gone down 22%, death from breast cancer has gone down 3.1%, and death from stroke has decreased by 8.9%. However, death from Alzheimer’s has INCREASED 50.6%.

And finally, for those of us who are concerned about the financial burden this disease puts on our nation, if we figured out how to just delay the onset of Alzheimer’s by 5 years, we could decrease what we spend on the disease by 50%.

These all seem like pretty compelling facts as to why we need to raise awareness and put a lot of funding into research.

Most compelling to me though is hearing the stories of people who live with dementia and the stories of how dementia affects the patients loved ones. It is a devastating  illness where the patient looses everything about who they are. They lose their memories, and often even their personality. The sweet father you once knew can become an angry, volatile man who does not recognize you anymore. People die knowing nothing of who they are or what their life was like. That’s why we need to fight to end this crisis.

I am so thankful for the Alzheimer’s Association and all the wonderful people we met this evening who are willing to work together to make a difference. It gives families like us hope and patients like my Mom the knowledge that people care about her.

What can you do right now, right this second? Sign up at HERE with the Alzheimer’s Association to be an advocate and they will send you monthly updates on how we can make a difference.

Blessings,

Rev. Katie

The Medicine Dance

This weekend we learned a new section of choreography in the medicine dance. Many of you know this dance. Where the doctors try all different kinds of medicines that are supposed to solve this or that problem, only to find they don’t work, cause more problems than good, and then they give you another medication, and another, all causing their own problems, on top of the problems you already have.

We had a rough time this weekend because Mom started a new medication which is supposed to help her sleep. Mom’s excessive fatigue during the day limits her activity to, on average, three hours a day, and the rest of the time she spends sleeping. Her doctor suggested that while extreme fatigue is common in Parkinson’s Disease, maybe we could lessen it by helping her sleep better.

Mom has REM sleep behavior disorder (RBD). REM sleep is dream sleep, and during this time your body is paralyzed except for eye movement and breathing. This is good because physically acting out your dreams would be a problem. However, many people with Parkinson’s have this RBD which means they are not paralyzed during their dreams and they act them out. Also, the content of the dreams are very similar for all patients. In these dreams a loved one is being attacked and the patient is trying to fight off the attacker. Some people while acting out these dreams hit their partner in bed and so this can cause a lot of problems. For Mom though, she mostly just talks a lot, screams out in her sleep, and spends most of the night in a state of barely conscious extreme anxiety. I remember she told me of one dream where an animal was attacking our son Jeffrey and she was trying to fight the animal off.

This means that Mom does not get a good deep sleep because of this sleep disorder. There is a medicine that can counteract RBD and the doctor thought if she gets some more restful sleep, that she might be less tired during the day. So, we tried it for a few days.

This medicine Mom took is supposed to be fast acting, supposed to be short lasting, supposed to make her less tired during the day, supposed to have her wake up well rested, and supposed to get rid of the nighttime hallucinations and dreams.

Well, it is fast acting, got rid of the hallucinations and dreams, but made Mom unstable, less able to walk, and so tired all day that she could barely get out of bed. If she did wake up she would stare off into space and barely move. She would say she was going to go get dressed, and then just sit there and stare at her coffee cup. The medication really immobilized her and made a person who is already unstable and who falls easily, unable to walk without assistance.

So, we will call the doctors again and see what they say. What the will probably say is the medicine was not supposed to do those things but medicine interacts differently with everyone. “We will try something else,” they will say. However, often this trying something else all the time just makes life more difficult and scary for us all. The whole thing is just frustrating, and very impersonal.

The dance will continue and I just hope no one falls and gets hurt.

Blessings,

Rev. Katie

November: National Alzheimer's Disease Awareness Month

Photo from Scene

Despite being relatively in contact with what is going on in the world of Alzheimer’s/dementia, I did not know until a few days ago that this month is National Alzheimer’s Awareness Month. This tells me that we defiantly need more publicity around this disease and I hope one day this month will be as recognizable as breast cancer awareness month.

So, in an effort to get more information to everyone, I have a few resources for you. There are links to these events below.

First of all, I live in the Cleveland area of Ohio so let me fill you in on what is going on here. If you drive downtown, you will notice that the top of the Terminal Tower is purple for Alzheimer’s awareness. Spread the word to your family and friends about what the color of the Terminal Tower means. Also, there is an event next Tuesday, November 9 called “A Nation Responds to the Alzheimer’s Crisis” which sounds like a great program highlighting what needs to be done to address the Alzheimer’s crisis, which I wrote about in a previous blog post.

For people who are in their 20’s and 30’s, there is an event on Thursday, December 9 at Shula’s 2 called “Party for a Purpose.” I think this is a wonderful idea because not only does it raise awareness, but it does it in a way that gets the younger generations involved. I am 31 and rarely meet people my age who have a parent with Alzheimer’s. Many people my age do not really know the details of this disease. Nor do they know that there are many things we can do now to delay the onset of dementia or even just keep our bodies and minds in the best shape possible so when we are older we do not have a multitude of health problems that make our last years or decades harder to handle. Events like this can help us care for ourselves and others better, and have compassion for people dealing with this disease.

"A Nation Responds to Alzheimer's" featuring Robert Egge, Vice President of Public Policy and Advocacy for the Alzheimer's Association Tuesday, November 9  at the Visiting Nurse Association Click here for more details and RSVP to Vicki at vicki.winner@alz.org or 216.231.1332.

Alzheimer’s Association Invites Clevelanders in their 20s & 30s to Party with Purpose Thursday, December 9 Shula’s 2 6200 Quarry Lane, Independence, 44131 Join other Clevelanders in their 20s and 30s in this swanky bar and restaurant for a festive night of appetizers, drinks and great conversation. Please bring an item to donate to a local Alzheimer’s facility. Your purposeful donations will make special holiday gifts to those in need. RSVP on Facebook or contact Sheryl Berman at sheryl.berman@alz.org or 216.231.1466.

There are other events coming up in our area throughout the year, such as the Memory Walk each October. I want to thank Sheryl Berman, the Special Events Coordinator for the Cleveland chapter of the Alzheimer's Association for giving me this information. I am sure she will keep me posted on what is going on and I will forward the information to you all.

For those of you not living in the Cleveland area, you can find out what your city is doing for National Alzheimer’s Disease Awareness Month by visiting the Alzheimer’s Association homepage and entering in your zipcode.

Together we can raise awareness, look for a cure, and help care for one another.

Blessings,

Rev. Katie

Manicures With Mom

Once a week I give Mom a manicure. I like this time with Mom because it gives us a regular routine of spending quality time together. Sometimes we have to build these moments into our life, moments when we are just present with another person without the distraction of people or television. When we do not consciously make the time, we often lose the opportunity to really connect with others. I learn the most about how Mom is feeling when we have this one-on-one time. I am glad this small ritual gives us these moments of greater knowing and understanding of one another.

Painting Mom’s nails also provides me with a lesson in life. When I hold her hands, with the absolutely perfectly smooth and soft skin I have always wished I had, I try to steady her tremors. What I noticed though is if I attempt to hold her hand steady, I actually make the tremors worse. It is as if her hands are trying to push back at my attempt to hold them still. This has been a good learning experience for me to stop trying to control life and live in the moment, accepting things as they are. Sometimes Mom gets annoyed with the tremors and apologizes for them. I keep telling her it does not matter if her hands shake, it is not a problem. I want Mom to know that I and other people will love her and care for her no matter what happens. There is no need to apologize for who you are or what is happening to you. We will be there to paint your nails, help you get dressed, or do whatever else you need.

And there is just something about human touch that is healing and important. When my husband was taking pictures for this blog post, we did many different poses. Most of them were with my hand over Mom’s and for some reason, none of the photos really looked right. Then this photo pictured here jumped out at me as the correct one. My hand over Mom’s did not look right, but this one, with her hand over mine does. It reminds me off all the times Mom has reached out her hand to take care of me. To hold my hand when I was scared or pat my hand to remind me she is right next to me. This was the right photo which showed our relationship and our personalities. Mom is the one with the beautiful understated yet elegant fashion with the subtle nail color, and I am the one with the love of bold colors such as black with purple sparkles.

It is amazing to me how one small act in life, which probably takes a half hour a week, can teach me so many lessons and reflects so much about who Mom and I are.

Blessings,

Rev. Katie

Dressing Mom

Mom and I went out shopping today to try and find her some new clothes that fit her ability requirements and our lifestyle requirements. We needed shirts that were washable, dryable, no-iron, wrinkle free, that you do not need to put over your head, with large button holes, for a petite height, and which fit Mom’s body shape (which is the shape of most women, not a size 2.)

It is a good thing Mom and I have so much fun together or we would have lost it today. Most of the shirts that fit were in a size with sleeves which were much too long and shoulders that sagged. The suggestion from the sales representatives was to layer. We should get a smaller sized shirt, leave the shirt open, and wear a tank (which you slip over your head) underneath it. I tried explaining that layering was too complicated with Mom’s Parkinson’s and dementia. One sales associate treated me like I was the worst daughter in the world by saying Mom needed clothes that were easy to wear, even though Mom was right there agreeing with me. I did a lot of the talking because Mom was having a hard time explaining what she needed. It was as though the woman thought I was over exaggerating Mom’s limited ability and I was putting her down. Frankly, it was offensive to be treated that way- judged as if I was a bad person. And it was demeaning to Mom that this woman expected Mom to be different and she could not to recognize Mom’s limitations.

I know many people don’t truly understand Parkinson’s or dementia. People usually think Parkinson’s means head or hand tremors. They don’t know that often patients can’t use buttons well, or they can’t lift their arms over their head or put their arms behind their back. People do not understand that dementia affects a person’s ability to understand where the button holes are and figure out how the clothes go on. This is because we have a lack of awareness of these two diseases. We do not talk about them enough and most of the time patients are relegated to their homes or in a nursing home.

There are clothes made for people with Alzheimer’s and Parkinson’s but they are highly unflattering attire. We looked at them, but Mom was not ready to go there. Needing to wear unappealing clothes because of Mom’s illness is another way to take away who she it. It says: “Look at all you have lost, we do not even make nice clothes for you to wear.” It is just another way that her worth and dignity are slowly taken away, and another way we remove people like Mom from mainstream society.

I know some people might think something like clothing is a petty thing to care so much about. I know the fact that we even have the ability to buy new clothes is a blessing. However, the clothing issue is important because it is another part of this disease which makes life harder for Mom, and it shows us how our society treats people who are different.

Blessings,

Rev. Katie

Meet the Person Where They Are - Or Not

I have read a lot about Alzheimer’s and one of the main suggestions the professionals give you about caring for someone with dementia is that you should meet the person where they are. They say not to argue with a person with Alzheimer’s when they insist that it is 1950 and they are in high school. Don’t try to convince them that they are in a nursing home when the person really thinks they are working back in their profession from twenty years ago.

Before I lived with my Mom, and even when I worked as a chaplain a few years ago, this made sense. However, this advice does not always make sense when you are actually living with a person with dementia.

Mom is not to the point where she thinks she is a teenager again or does not understand where she is, who she is, or who we are. She does have increasing confusion though and I notice that when we are struggling with Mom, often the professional advice would be to meet her where she is, go with what she thinks is going on. But that does not always work.

For instance, for the past two days, Mom has been worried about the time and day of her next haircut. She saw the appointment and she thought she had a conflict with the appointment so called to change it. When I pointed out that there was no conflict and she was looking at the wrong month, she asked me to call and change the appointment back, which I did.

That was yesterday.

Today again she could not understand when the appointment was and how it did not conflict with another event. We kept trying to explain it to her, but even she mentioned that she just could not understand what was going on. It was frustrating for her and it is probably a discussion we will have again tomorrow, and maybe every day for a week and a half until her appointment.

I can’t meet Mom where she is on something like this because we can’t just go to a hair appointment this weekend that does not exist. Or what about when she insists that she has more porcelain dolls in the basement, when in reality they just do not exist? I can’t get them for her, because there is nothing there. I can’t pretend they exist because she wants to display them. It causes a lot of emotional pain for her, and all of us, to go through these times, but meeting her where she is, is not an option.

This middle stage of dementia can be quite hard to handle because you can not just enter into the imaginary world of the patient because they still know what is going on. They know their brain is not working correctly and they are struggling to understand what is reality and what is not.

I feel like much of the advice about dementia is for people in the advanced stages and those suggestions just do not apply to where Mom is. If anyone knows of more books or advice for people in the middle stages, let me know, maybe we have just not found it yet.

I guess today I am just trying to express that sometimes all the advice and suggestions in the world don’t work for individual situations. It is a frustrating and sometimes lonely place to be.

Blessings,

Rev. Katie

The Future of Alzheimer's

“Our government is ignoring what is likely to become the greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal. It attacks rich and poor, white collar and blue, and women and men, without regard to party.” This quote is from a great article in the New York Times today called “The Age of Alzheimer’s,” written by Sandra Day O’Connor, Stanley Prusiner, and Ken Dychtwald. It is a wonderful overview explaining the increase we will see in Alzheimer’s over the next twenty years, and why we need to increase funding for Alzheimer’s research.

The article points out that for every penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with Alzheimer’s. As the baby boomers reach 65 years and older, more than 10,000 people per day are at increased risk of Alzheimer’s.

I know in my Mom’s lifetime, there will most likely be nothing that will be found to cure her dementia, but if we start giving more money to research we can create a better future for the potential 13.5 million people who will get Alzheimer’s by 2050. My Mom hopes for a better future for these people than the future she was given.

Mom watched her mother live with and die from Alzheimer’s disease thirty years ago. In those thirty years we have made very little advances in the cure of this disease. I know Mom does not want her children, who genetically have an increased risk of Alzheimer’s disease, to go through what she is experiencing. She has committed to donating her body to science after she dies so researches can have more of a chance to combat this disease.

An increase in funding requires a mass movement of people demanding that Alzheimer’s research become a priority. It will entail legislation which will increase the annual federal contribution to research, such as the bill which is in front of Congress right now, S 3063: National Alzheimer’s Project Act. For more information on how you can help pass S 3063, go to this page of the Alzheimer’s Association website. You can find out if your member of congress supports the act and find ways to contact him or her.

Blessings,

Rev. Katie

Keeping Mom's Spirit Alive

Julia as Belle, 2010

My niece just sent me some photos of her wearing a costume that my Mom made for me in high school, fifteen years ago. I was struck by two things, one that Mom can no longer sew or make things like this anymore, and two that we can keep Mom’s inner spirit alive by incorporating the past.

When we honor and remember what Mom used to be able to do and when we incorporate the things she has made into our lives today, we are keeping Mom’s memory alive. We remind her of what she has done in her life, and we let her know how much those things mean to us.

The costume my niece Julia wore is a Belle costume from Beauty and the Beast. Belle is my and Julia’s favorite Disney princess. I wore that costume for Halloween, and then in college I wore it while I worked at the Disney store and I created “Story Time with Belle” at the mall. Not only are our lives touched by that costume of a character we love, but so were many children’s lives because they loved story time with Belle. They would draw me pictures and thank Belle for reading to them.

When Julia wrote to us and sent us the photos, she made Mom very happy. Mom saw just how much she contributes to this world, even now that her abilities have changed.

The inner spirit of who we are lives on through the people who keep those memories going. Maybe it is our job now, as Mom is losing her abilities and memory, to help keep her spirit alive by enjoying the past and reminiscing with her.

Mom often talks about feeling worthless now that she can not do things like she used to. She feels like her inner spirit is lost. We can help her find herself again by the ways in which we honor who she is and all the things she has done for us.

Story time with Belle, 1999

Julia can wear her costume, I can cook pies making the crust Mom taught me to make, and my son loves his white blanket Mom made for him which he carries everywhere. Mom’s spirit and love is in all of those things and we can share that with her, with each other, and with the world.

Blessings,

Rev. Katie

Thankful for Community

I was out of town for a few days this weekend for the ordination and installation of one of my good friends from seminary. Being with many of my classmates who I had not seen in a group since graduation in May reminded me of the wonderful power healthy community can have in our lives. I realized I would not be where I am today, living with my parents, if it had not been for the community example of my classmates and the example from many Unitarian Universalist churches I have been in contact with over the years.

Six years ago, when we joined our first and current Unitarian Universalist church, West Shore UU Church, was the first time I learned about real community. It was there where I was lifted up and in many ways healed by a community who accepted me just as I am.

Then four years ago, my husband, son and I moved to Chicago for my seminary education. It was with a two and a half year old son, no keys to our new apartment, and a broken down moving truck that, we met Michael and Cara. Just in the midst of having no food and a tired child, Michael came walking into the backyard with his two little boys around Jeffrey's age. They invited us into their apartment. We played and laughed and when Cara got home from work we all had a dinner of mac and cheese, grapes and peas. It was one of the best dinners I can remember.

From then on I learned what community means and I was reminded of it once again this weekend. This weekend I was on traveling alone with my son and yet I was not truly alone. Much of the weekend was spent in choir rehearsals, which would be hard to attend with a child. However, friends of Michael and Cara, who I had just met, and our seminary peers took care of Jeffrey and the two boys. They played with them, drove them from church and back. Carried three car seats, three kids, and various item the kids had brought with them.

Complete strangers, to us, from Michael’s new wonderful congregation provided home hospitality to those of us who had traveled in for the occasion. At the lovely home we stayed in Jeffrey got to eat fresh eggs, see chickens, pick strawberries and carrots, and take a boat ride in a pond. He learned about plants and animals he was unfamiliar with.

It was the example of my friends and the many Unitarian Universalist churches I have been to, which has allowed me to come back and live with my parents. These people taught me that if we can love people just as they are, then we can live in close community together.

Healthy community does not mean a group of people who always get along and are always happy. It means a group of people who have made a covenant (a promise) to support and care for each other. It will not always be easy, you may not always get along, but you keep coming back to the relationship. When things don’t go well, you talk about it face to face. You give in, you compromise, you agree, you disagree. We speak the sometimes hard truth to one another. We celebrate each other’s joys, comfort each other’s sorrows, and speak honestly about our failures. A community does all of those things in respect and love. A community comes back to it’s covenant when it fails and it remakes the promise to each other.

In our house, we have fun, we respect and care for each other, and we mess up. Without my experiences with people who embody this ideal of healthy community, I never would have thought Mom, Dad, Jeff, Jeffrey and I could live together. Other people showing me that I am loved and cared for just as I am enabled me to live out some of my highest values, those of caring for our loved ones. Ever since I was little I had a vision of a world like this, where people helped each other in this way, but I never thought it was possible. These communities I have been with in the past six years have made that dream a reality.

It is with gratitude and joy that I recall that first day in Chicago with Michael and Cara. From their example, and the example of many others, I learned what true community means and now I am able to live that dream with my parents and the larger community of which we are a part.

Blessings,

Rev. Katie

Too Much Going On

It has become increasingly more complicated to schedule things in our house anymore. Mom is getting more forgetful and has an especially hard time if more than one thing is different than usual. For instance, this week my husband Jeff is out of town part of the week, my son and I are gone over the weekend, and I have had a few meetings in the evenings, and one night all of us had meetings at the same time. 

The other night Mom had no idea where we were going and when I went over the travel schedule with her again, she was angry and made the comment “Why do you guys hide everything from me?” I can see why she is angry. In her mind, we did not tell her what we were doing. And frankly, I admit that while we did tell her, I did not remind her enough or remember to put everything on the calendar. In the future I will write things down better and remind her more, but it is not only the schedule that is confusing. Even when Mom remembers the schedule she can’t remember why we are going somewhere or what we will be doing. It is just way too much information for her to remember and it is frustrating.

It is hard to balance all of our lives together at one time. We can’t stop doing things we like, but we also need to make sure Mom is more included and does not feel as though we are hiding things from her. Possibly writing down the when, where and why of our travel and meetings would be helpful.

The reality is that sometimes life moves very fast and a person with dementia can not process things quickly. You really need to slow down and be patient. However, we do not always have that option, and those are the times when it is particularly hard. It is not pleasant to have to leave Mom when she is confused and did not know we were going anywhere. But we have to get to the meeting, or catch the flight, and sometimes we can’t slow down and take more time.

I feel in those moments that I do not have the ability to address Mom’s feelings and truly take care of her. I feel like I am choosing myself over her, which is true. I know we all have to chose ourselves over other people at times. We do this with our friends, partners, kids. This is never an easy thing to do, but if we do not take care of ourselves and do the things that bring us joy, we can’t really take care of and support others.

What I hope is that overall Mom knows we love her and want to take care of her, even if we are not good at it sometimes, and even if we have to leave.

The best thing we can do is keep trying to have better communication as her abilities change so we lessen the times of last minute confusion just before we have to head out the door.

Blessings,

Rev. Katie

The Long Goodbye

It is common for people to call Alzheimer’s disease, “The Long Goodbye.” Patients wrestle with this illness for decades and therefore it is a long goodbye for the family and friends of the person with dementia. We slowly see them slip away. We say goodbye to small parts of them at first, their ability to remember a new phone number, their quick answers to questions. Then we start to say goodbye to more and more. We say goodbye to the hobbies we used to do together, we say goodbye to their identity, we say goodbye to our mother or father who is looking at us but has no idea who we are.

Every day we live with how hard it is to watch someone go through this and we experience how difficult it is to care for them. Sometimes it feels like days last forever. Nancy Mace and Peter Rabins wrote the book The 36 Hour Day to illustrate just how long the days may seem caring for a person with dementia. It is a long goodbye.

And yet, sometimes it seems much too fast. I look over at Mom and notice that she no longer looks like the mother I know. She is much smaller, the twinkle in her eye is gone, sometimes she forgets how to write, and sometimes I have to cut her food for her. In those moments I wonder how this all happened so fast. In my mind and memories I still see Mom cooking Thanksgiving dinner for 30 people. Getting every single dish out on time, perfectly cooked, steaming hot. Beautifully golden mashed sweet potatoes without a lump in sight, the marshmallows on top perfectly browned and crisp. I see her in her blue and white apron with the red trim, creating the most perfect pies in her immaculately clean kitchen. She is not the same anymore and sometimes it seems like it happened way too fast.

What saddens me even more though is something I have not heard mentioned when people talk about the long goodbye of Alzheimer’s. We always talk about the long goodbye for the family and friends, but what about for the patient? What is it like to say goodbye to yourself? To who you are and everything you have done? To say goodbye to your family and friends? Years or decades is a long time for them to not only say goodbye to themselves, but to everyone around them.

My family tries as best it can to live in the moment and enjoy what we have, but there are times when I get a sense of just how sad and scary this disease is for everyone involved.

It is a long goodbye which comes much too quickly for us all.

Blessings,

Rev. Katie 

The Great Edamame War of 2010

Edamame in flight. There is an edamame in the air between Jeffrey & Mom

It started out as a nice quiet dinner of spaghetti tacos and edamame. As Jeffrey tried to pick up an edamame on his fork, it launched into the air towards Papa. To which Jeffrey laughed hysterically and Papa said “If you really want to get some height on that, you have to do it this way.” And he put an edamame on the handle of a fork and told Jeffrey to hit the top of the fork. Jeffrey hit the fork and sent the edamame flying across the table.

And that is how the Great Edamame War of 2010 started.

Jeffrey was launching edamame into the air aiming at targets, such as Papa and the water glass. We were all laughing and Jeffrey was cracking up so hard that he couldn’t breathe. We had edamame on the floor, in the water glass, and in our laps.

When it started, at first I told Jeffrey to stop flinging edamame because it had been a hard day for Mom and she is usually not one for messiness and chaos. However, she joined in on the fun, putting spaghetti on her nose as if it were a worm, and had a really good time.

One of the difficult aspects to Mom’s illness is that it is so unpredictable. For quite a few days, Mom was doing better than usual and was in a great mood. Then, for unknown reasons, she became much more confused. The confusion and excessive fatigue understandably increase Mom’s depression and frustration. She did not want to do anything or go anywhere, and she was very annoyed.

I had no idea one of the things that would cheer her up, even if it was just for a short period of time, was a food fight.

This illness is just so unexplainable and effects each person differently. We have no idea when Mom will have a good or bad day. Sometimes she remembers things, other times she does not. Sometimes she is happy, sometimes she is depressed and angry. We have no way to predict what will happen, and no way to fix what is going on.

When things are not going well I often worry and feel a need to keep my son quiet and behaving “properly.” In reality though, it is his innate joy of life, his rambunctious childlike nature, that helps Mom. His ability to have fun allows us all to bring out our inner child, which sometimes is just what we need.

Blessings,

Rev. Katie

"My Grandma"

My son Jeffrey and I were at the zoo yesterday. One of the docents (volunteers) at the zoo had a snake to show the kids and Jeffrey went right up to talk to her. As he was petting the snake, he said “My grandma used to volunteer here and she used to work with the snakes too.”

I could have cried when I heard him say that. I know it seems like such a small thing, but to me it was a big deal. It showed just how much Jeffrey knows about Mom because he lives with her every day. I also heard in his voice that he was quite proud of his grandma who used to handle a snake at the zoo.

By living with Mom and Dad, Jeffrey really gets to know who they are. He hears random stories about them from when they were little. A few days ago at school Jeffrey told me he had some bubblegum for Papa (my dad) and he started laughing. He was joking that he was going to pick some tar off of the playground because my dad had told him a story about how during World War II, when there was no bubble gum, Dad used to chew tar instead.

In many Unitarian Universalist child dedications, we say we give children roots and wings. The roots are their family background, tradition, where they come from; and the wings are the encouragement and acceptance that set the child free to be their own person.

I feel like Jeffrey living with his grandparents helps him know and understand those roots in a very different way. The roots really are a part of his life, he is proud of his grandparents, thinks they are fun, and he loves to hear stories about them. He also knows more about me and his aunts and uncles because Mom and Dad can tell him stories about us that even we don’t remember. He gets to hear what we were like when we were kids and the funny things we did. Jeffrey feels a connection to something larger than himself since he knows these roots so well. He will comment on things he does or traits he has and say, “I think I got that from Mommy” or someone else in the family.

The gifts Mom and Dad give Jeffrey just by living with him and sharing who they are with him are priceless.

Blessings,

Rev. Katie

To Nag or Not to Nag?

We spent much of the day today preparing for Mom to go out to a church function tonight. Dad talked to her earlier in the day about going and she had agreed to go. Then around dinner time, Mom decided that she did not want to go so Dad, I and my son all tried to convince Mom to go out tonight.

At the Cleveland Clinic Health Talk about Parkinson’s disease, we were told that family and friends of the patient should not nag them. We should not remind them to stand up straight when they walk, we should not tell them repeatedly to do something.

Tonight though, we were nagging Mom and I was not going to let up.

You see, socialization is one of the best things for Mom. It is part of her “treatment plan.” The best thing for her to do today was go out and be with other people. I did not feel like we could back down and just not let her go because that would make her more depressed and lonely. It would bring her spirit down and make her feel worse.

So after much talking, or nagging, Mom went with us to church. She socialized, she walked around and talked to people on her own. She smiled, laughed, and had fun. She said after we got home that she is glad she went. She had a good time and it made her feel better.

I really want to respect the “no nagging” rule, because none of us likes to have people nag us about doing things. However, what do we do when not nagging means letting someone harm themselves? It is kind of like how I have to tell my six year old son to look both ways when he crosses the street. I remind him every time, because he keeps forgetting.

Sometimes, for all of us, the thing that would help us the most is the very thing we resist doing. At those times, we might need someone to nag us. To almost drag us out of the house so we take care of ourselves. I know I have needed my husband to do this for me, and at times it literally saved my life.

It is a hard balance to strike, but on days like today, it is well worth it.

So, nag away (responsibly and with compassion) my friends.

Blessings,

Rev. Katie