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

Carolyn L. Farrell Foundation for Brain Heath

My family has started a non-profit organization in my mother's name in order to help other people with dementia and other diseases of the brain. We hope to use ArtCare programs, like TimeSlips, to help others.

Art and imagination can help so much for people with brain disorders, but often these programs are only in institutional and in-patient facilities. We hope to have many free-standing programs for people who are living at home.

Please check us out and support us at www.farrellfoundation.com.




Register for our fundraiser, Ride to Imagine, a 15 and 30 mile bike tour.

Follow us on Facebook at Carolyn L. Farrell Foundation for Brain Health.

Follow us on Twitter at CLFFoundation.

Together we can harness the transformative power of imagination for brain health.

Blessings,

Rev. Katie

Just Sign Here

Today Mom needed to sign some legal paperwork, and she could not sign her name. It was heartbreakingly sad. It made her cry, to loose such a seemingly simple ability. What must it feel like to loose the ability to sign your own name, to identify who you are? This was not a signature on a card which I could do for her. This was a legal document, important to what she wants for her life, and she could not sign it. She could not dictate on her own what she wants for her future.

A signature is a big deal in our society. Nothing is binding or official unless you sign it. In order to even have someone else be a legal signatory for you, she needs to be able to sign her name to a document stating that right, unless you have her declared legally incompetent, but she is not at that point yet. She knows what she wants, and should be able to say so.

I am sure on a less busy and stressful day, in a quiet area, she will be able to sign the document, but it won't be easy. Any stress makes it harder for her to write, and this needs to be singed in front of a notary, which means someone will be watching her. That makes her more nervous.

I just doesn't seem right or fair that Mom is losing yet another basic right and ability.

Blessings,

Rev. Katie