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