Rules Don't Apply

When I was little I learned not to drink milk from my cereal bowl, I learned to eat neatly and not drop my food, I learned not to play with my food, and I learned that I had to eat what was put in front of me. I learned all the things most of us teach our children.

Honey banana rice with pork.

So the other day when my Mom mixed rice, bananas, and honey together at dinner, I was reminded of how many of those rules do not apply anymore. Mom just commented yesterday morning, after she had drunk the milk out of her cereal bowl, "Remember when I taught you not to drink milk from your bowl?" That memory made her smile. It was kind of funny for us to think of how she now does many of the things she taught us not to do. Her hands shake from the Parkinson's so she is sometimes a messy eater and drops her food. She does not always want to eat what is put in front of her so we make her something else.

What makes me really happy though is that none of us care about the rules. Who cares if she makes odd food pairings or has a messy spot at the table? She is still the beautiful person she has always been. She is still important and valued. It does not matter that the rules no longer apply.

It can be hard for us to watch these changes because these rules are often the ones that people believe split adults from children. They are a sign of ability and health. At first it made me sad to see Mom dropping her food, but that is really just my fear over the progression of her disease, not that it actually matters if she drops the food. As we see these changes, we need to remember that our loved on with dementia is still valued and important. The changes do not mean we are losing our loved one,  but that they are transitioning into a new phase in their life that we have the privilege to be with them for the journey.

Blessings,

Rev. Katie

"I Think I Lost My Mother"

It is quite an eye opening experience when you have to walk up to a stranger and say "I think I lost my mother, can you help me?"

http://www.flickr.com/photos/blackdutchdoublelibra/129954840/

Today Mom and I went to Jo Ann Fabrics, a large craft store. This is a store she knows well so when she said she was going to the restroom a few aisles away and she did not want me to come help her, I said ok. Clearly that was a bad idea.

Mom went to the restroom, I put something in my cart, and then I went right over to the bathroom to help her, only to find the bathroom empty. I then checked the men's bathroom and looked all around the aisles and could not find her. I started to panic. I had lost my mother.

I went to ask a sales associate who was helping another customer if she saw a woman in a long yellow coat with white hair. When she said no I told her and the customer, "I think I lost my mother, can you help me?" The sales associate was mid-aged, and just seemed to think I was weird. The customer was a little older, and immediatly said "Does your mother tend to wander off?" She understood right away that I was serious and Mom must have dementia. The customer was immediatly ready to help me search the store, when I saw Mom walk across the aisles so I ran over to get her.

For a slow lady with Parkinson's who needs a handicapped tag for the car, apparently she can be surprisingly fast at times. When I got to the aisle, I couldn't find her again!

A few aisles down I found Mom and all was well. She had gotten lost trying to find the bathroom. We finally got to the restroom and laughed hysterically at how I had lost her.

It is funny now, but in the moment it was really scary. I thought I might have to ask the store to go in lock-down like they do when a child goes missing. I had heard of this happening to people, and even Dad had mentioned that Mom has a tendency to wander off when he is getting something off the shelf in the grocery store. However, I figured it would not happen to me because I am faster than Mom and could keep an eye on her. I was so wrong!

When Mom first said she was going to the bathroom, I said I would go with her, but she said she didn't want me to. I really wanted to let her maintain some of her independence and since this is a store she knows, I figured I could let her get to the bathroom. I would then just follow a minute later so if she needed me I would be there.

It is hard for me to think of needing to care for Mom in the same way I need to care for my child. Actually, I no longer need to dress my son, but I do need to dress Mom. I have no idea where the line is between caring for her so much that I take away what independence she has left, and not caring for her enough so things like this happen.

Clearly I need to adjust my idea of how much independence Mom can have and care for her more like a young child. I hate admitting that because it can sound condescending or belittling, but I need to keep her safe.

This was another day of change and learning what phase of dementia we are now in.

Blessings,

Rev. Katie

Compassion

The other day after breakfast as I was running around trying to get ready for the day, I heard my husband Jeff ask Mom if he could help her put on her shoes. This was odd because usually Dad and I help Mom get dressed and she was already dressed and wearing shoes. Mom said yes, and added that she had a bit of trouble with her shoes this morning. My husband casually said "I noticed you have two different shoes on so I thought I could help you with that."

For some reason, this struck me as a such a special and compassionate moment. The way Jeff asked Mom about her shoes was so kind. He did not point out that she had two different shoes on or make a big deal about anything, he just offered to help her. I also think it is sweet that he even noticed her shoes because Dad and I were in such a hurry that morning I fear we could have let Mom leave the house with one black shoe and one white shoe.

I know technically it does not really matter if someone is wearing two different shoes, but it would have mattered to Mom. Jeff allowed her to leave the house looking her usual pretty and put together self, and that was a very special gift.

Mom, Jeffrey, & Jeff making cookies together.

Sometimes it is the little things we do, the ways in which we make sure our loved one maintains the life and dignity they want and deserve, which make the biggest difference.

Blessings,

Rev. Katie

Matching Grant Doubles Your Donations!

A generous donor has offered to match, dollar for dollar up to $5,000, donations to the Carolyn L. Farrell Foundation for Brain Health!

Now is the time when your donations can be doubled so please DONATE HERE to the foundation or REGISTER HERE for the Ride to Imagine.

Here is an update on the happenings of the foundation:

Our TimeSlips program for people with dementia is going well. People are inquiring about the possibility for a TimeSlips program on the East Side of Cleveland, which we would be happy to arrange, but we need the funds to do so and a few volunteers who would like to be trained as facilitators.

We are also in the process of researching possible ArtCare programs for people with mental illness. Again, we need to find the resources to carry out such a program.

The Ride to Imagine planning is underway and it looks like it will be a great event. While you can just show up the day of the event, October 8, the more early registrations we have the better we can plan for the amount of food, volunteers, and t-shirts we need. Please register for the bike tour or garden walk today.

Thank you for your support and for meeting the challenge our donor has set before us. Let's see how fast we can raise that $5,000 which will instantly turn into $10,000!

Blessings,

Rev. Katie

Already Dead?!

I could not believe this article: Pat Robertson says Alzheimer's makes divorce OK.

I have never been in the situation of having a partner with Alzheimer's so I cannot comment on the acceptability of divorce or even having another companion while your spouse is still alive. As a minister, if someone wanted to speak with me about that, there would be a lot of pastoral care and discernment which I hope would help them make their own intentional and loving choice.

So, my main problem with Robertson's view is not his statement that divorce is ok, because one cannot make such a generalized statement. My bigger issue is Robertson's justification for why you can divorce your spouse with Alzheimer's. I believe his justification is outrageous, disgusting, and just promotes stigma of this disease.

The article says:
"Terry Meeuwsen, Robertson's co-host, asked him about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."

"If you respect that vow, you say 'til death do us part,'" Robertson said during the Tuesday broadcast. "This is a kind of death.'"

The idea that Alzheimer's is a death is ridiculous. It is a change, a deterioration, an illness, a long goodbye, but not a death. The person is still here and worthy of our love and care. Just because they are not exactly the same person we married, does not mean they are dead. Heck, I am not the same person my husband married eleven years ago.

As I sat at dinner with my Mom today, I kept thinking, "How could I tell her she is already dead?" That her life is gone, she has lost everything? Even people in the last stages of dementia who outwardly do not remember anything, who may not even know who they are anymore, are not gone. We have no idea how much is going on internally.

However, we do know that people have lucid moments. Moment's of recognition of a loved one. Moments where they sing a song from childhood, or recite a well loved prayer. Moments when they smile at you as you sit and talk to them. Clearly they are not dead.

Seeing Alzheimer's as a death only increases the fear around the disease. It takes away their humanity and allows us to distance ourselves from the pain of our own loss. It allows us not to care anymore. It allows partners to easily get a divorce, children to never visit their ill parent, friends to walk away, and communities to push people off into a corner.

All of us change over time, people get all different kinds of illnesses, we do make decisions on how our relationships will be going forward. The right way to make that decision though is not to let fear make excuses for us, we need to make a loving and responsible choice.

We may have to put a parent into a nursing home to keep them safe. There are illnesses or situations where parents have to let their children live somewhere else because that is what is healthiest. These are difficult decisions, not to be taken lightly. I believe Pat Robertson is seeking to create an easy way out for people instead of asking them to really face all of what such a decision would mean mentally, emotionally, and spiritually for all involved.

Blessings,

Rev. Katie

Being Present

Thanks to friends, I found this video from Kate Whouley who has written a book about her mother and dementia called Remembering the Music, Forgetting the Words: Travels With Mom in the Land of Dementia. I have not read the book, but I am getting it right away.

In this video, Whouley explains how living in the moment is extremely important for caring for and being with someone with dementia.

My Dad and I have talked about this frequently. He does a lot of study and practice of Zen Buddhism and he has brought amazing insight into caring for Mom in a way I think most people are unable to do. This is because he understands the present moment is what matters. Not what Mom used to be able to do, not that she may forget this moment in the next moment, not what we need to do tomorrow, but what we are doing right now matters.

Being present is not always easy. Especially when you need to get to a meeting or work and Mom is upset you are leaving when you have told her many times where you are going but she keeps forgetting. How do you figure out how to live in the moment with her when you need to be somewhere else? However, when you are in the moment and see her enjoy something, her smile makes you remember that being present is key to helping her have a wonderful life.

Once I ready Whouley's book, I will post a review, but this and the other video of her's are wonderful.

Blessings,

Rev. Katie

Scared

As I watched my Mom struggle over finding the words she wanted to use today, I could not understand what she was trying to say, and I realized I am scared. I am afraid of how much worse her dementia will get. I am scared to watch her die, because in many ways that really is what we are doing.

As my son attempted to give Mom consequences for her not eating dinner and just eating ice cream, I realized he is scared. I asked him about this later. He said he is afraid if Mom does not eat right and take care of herself, she will get even worse and die faster.



I see how all of us-friends, family, and Mom-are a bit more scared now. There has clearly been a shift in Mom's functioning. She is much harder to understand at times and her physical ability is getting even worse.

Being scared happens in times like these. It's ok to be scared, but what surprised me today was that I had not been noticing just how scared some of us are.

Sometimes we get so caught up in trying to live day to day that we miss what we are feeling and how we are processing things.

Blessings,

Rev. Katie