Tribute to Two Fathers

Charlie (my dad)

My dad is one of the most interesting and inspiring people I know. He has changed so much over the years that I almost grew up with two different fathers.

When I was little, our nickname for him was "Grumpy" after the dwarf in Snow White. He was conservative and strict. I always saw him like a big teddy bear though, with a softness in the middle of his rough exterior.

Over the years, many tough life circumstances have changed him. Well, not so much changed him, but have let that soft interior be what he shows to the world now.

If anything, Dad has taught me to change with the tide. Nothing is permanent, and we can adapt to what is happening, if we can let go of trying to control and fix everything.

He also taught me to love and care for my family, and that he loves my Mom more than anything. He always attributes his success in life to my Mom who is brilliant, intelligent, and supported him.

I attribute his success also to his ability to change his opinion as he learns more about the world, and his deep spiritual grounding in a belief that change is part of life, and life is good.

I look up to Dad, so it is no surprise that I married someone so much like my father that they even have the same birthday.

Jeff (my husband)

My husband is just as calm and grounded as my Dad. He also fiercely loves his family and had a rough exterior when I first met him.

Jeff is an amazing father, always there for our son and he has an immense amount of patience. He never withholds emotion from Jeffrey so he always knows he is loved. He respects Jeffrey and wants him to be none other then himself.

Jeff loves life and easily adapts to change. He is the smartest person I know and always loves to share his knowledge with others so they can succeed.

Charlie & Jeff

In a sermon for Father's Day yesterday, the speaker mentioned a quote that said the best gift a father can give to his children is to love their mother. My Dad had never heard this quote before, but he sure lived out that gift. I never remember a time when Dad was not telling me how much he loves Mom. Now, as her caregiver, he says his greatest honor in life is to care for Mom. I see every day how much he loves her in how he dresses her, laughs with her, and always advocates for her.

Jeff is the same way. He too gives our son the gift of loving me, no matter what. It is no easy, fun, or pleasant thing to take care of a wife with bipolar disorder, but he has worked for many years to be more understanding and caring.

Jeff and Dad are the main caregivers in our home, and are the best role models for my son Jeffrey. Every day Jeffrey sees two strong, caring, loving men take care of their families with joy, yet also stay true to who they are as individuals. That is a difficult balancing act.

Thank you Dad and Jeff for being the best role model and friend I have as a daughter and wife, and our son has as a son and grandson.

How Many People Does It Take?

My sister, Dad, Mom, Jeff and me

How many people does it take to care for a person with dementia?

For just three days this weekend, in order for all of us to be able to do the things we need to do (work, attend church functions, celebrate an anniversary, take a class on dementia, and do a bike tour) we need six adults and one child. True, this is a far busier weekend than most, but now that Mom can not stay at home alone anymore, it is very hard to work out our schedules.

My sister has given us the wonderful gift of spending time with Mom three days in a row while Dad goes out of town to learn about how to better communicate with people with dementia, Jeff and I celebrate our 11th anniversary and attend a few church events, and Jeff, Dad, Jeffrey and I to go on a bike tour we have been looking forward to for months. My sister is so amazing!

Two of my son’s friends are having him over for a playdate while I attend a work meeting one day and Jeff and I go to a musical for our anniversary.

I didn’t realize how hard this was going to be, not being able to leave Mom home alone. We can not run up to the store anymore, or leave my son and Mom home together for a bit to attend a short meeting. Today I was home, but upstairs working, and ten minutes after the boys left on an errand, Mom was opening up the doors to the house looking for them. Even having me in a different room was too confusing for her.

They say it takes a village to raise a child, but it takes a village to take care of us all.

Thank you to everyone in my village!

Blessings,

Rev. Katie

Never Enough Time

For the past year I have been planning to record the story of Mom’s life. I want to take out old photos and have her tell me the stories behind them. I want to know what some of her favorite memories are; favorite (or not so favorite) vacations. I fear I have waited too long.

In the past few weeks, maybe month, it seems that Mom’s dementia is progressing very quickly. Often I can’t understand what she is saying and she starts thoughts only to stop in the middle of them and stare out the window. When I ask her to continue what she was saying, she does not remember that she was talking. She is remembering less and less every day.

The other day I asked her what her favorite vacation with her brothers was. She said she remembers having fun, but does not remember the specific vacations. If I ask her about Germany specifically, she says she liked it. I asked her about vacations with the kids and she can only recall those memories if I remind her of the story such as “What about the time that donkey scared one of the boys?” Then she can tell me a bit about that memory.

I have always grown up with the sense that there is never enough time. We have had many illnesses in my family and because of that I have always had a fear of losing my loved ones. I used to call my Mom from school if I thought I had forgotten to say “I love you” to her when I left in the morning, just to make sure that was the last thing I said to her in case something bad happened and that was the last time I saw her. For some reason though, this quick deterioration snuck up on me.

Whether or not you have a loved one with dementia, try to record some of the stories of your loved ones lives, and your own life. These are the things that people will hold on to and they help create a sense of identity and belonging to the younger generation. 

Four years ago I could not find a book to read to my son at bedtime, so I told him a story from my husbands childhood instead. Ever since then, our son has asked us “Tell me a story about when you were little.” This is so important to him. He looks for the similarities in these stories between us and him. He likes to comment “I must have gotten that from you.” For instance, we were just talking about the amusement park Cedar Point which he and his dad have already gone to twice this season. My Mom loves roller coasters as well and she was talking to him about some of the rides at Cedar Point. He knows he gets his love of coasters from his grandma and his father.

Time goes by too fast, so record what you can, spend time with those you love. I worry that one day I will wake up and Mom won’t know who I am. I can’t wait any longer to record all the things her grandchildren will want to know about her.

Blessings,

Rev. Katie

Coming Together for Alzheimer’s: Fat Little 5K

I always find it so inspiring when I hear about what someone is doing to try and help people living with Alzheimer’s Disease. Often these ideas come about over casual conversation with friends and family, and The Fat Little 5K is just such an idea.

Last year, Fat Little Buddies Tavern owner Joe O’Malley happened to be talking to a friend, Maureen Loesch. Joe’s father has Alzheimer’s and so does Maureen’s mother-in-law. They wanted to do something to help their loved ones and since Maureen is an avid runner, they came up with the idea for the bar to host a 5K race and donate the proceeds to the Alzheimer’s Association.

The first year of any race can be a bit stressful. You are never sure how many people will come to the race and how the logistics of actual race will work out-from advertising, registration, to post race goodie bags and events. However, last years first annual Fat Little 5K brought 250 runners and raised about $6,000!

What I love about this race is that it is truly community friendly, which you do not always find at events like this. Runners, young children, older adults, and people with dementia can all participate in some way. There is a 1 mile walk, a 5K run, tons of kids games (such as a bounce houses), food, and indoor seating in the bar where you can watch the after race events. Everyone is welcome at the race. This means we can create a truly inclusive community. Those who like to run for a good cause, caregivers, family, friends, and people with dementia.

Events like these show Mom and others with dementia and Alzheimer’s that the larger community does care about them. Not everyone who runs this race will know someone with dementia, but their participation is so valuable because it shows they care about the millions of people in our country who are affected by the disease, and they want to help.

This year, Joe hopes to get at least 700 people registered for the race. Our family will be there and we hope to see you there too!

Here is a link to the registration: Fat Little 5K Registration. Register online or show up and register on race day!

If you can’t come or don’t live in the Cleveland area, you can make a donation here: Fat Little 5K Donation Page.

Blessings,

Rev. Katie

A Powerful Video

from the Alzheimer's Association

I just quickly wanted to share this video with you all. I think it is quite powerful and shows the main facts and figures of Alzheimer's Disease. It makes me cry every time. Please share it with others so they know how this disease affects our nation.

Alzheimer's Facts and Figures video, by the Alzheimer's Association.

Blessings,

Rev. Katie

Looking For Help

When I look at the “Stats” for my blog, one of the statistics they give me is the keywords people have used which brought them to my website. I look at these keywords almost every day and it makes is clear to me that so many of us are looking for help.

You may be like me, up during the wee hours of the night, searching the web for answers. For help to understand whatever new things have popped up in your world of living with dementia.

I wanted to share some of those keywords with you, as a reminder that while dementia is different for every person and family, we still have so much in common. We are all looking for answers to things we might not always talk about during the day at work, at school, or at home, but we search for in the anonymity of the internet.

Maybe it is helpful for all of us to know we are not alone:

“refuses to read books or exercise dementia”
“what if a dementia person is in denial?”
“combination of dementia and Parkinsons”
“dementia getting worse”
“dementia patients don't know what day it is”
“dementia the long goodbye”
“Alzheimer’s grief”
“dementia activities”
“Lewy Body prognosis”

"Dad care for Mom"
“Alzheimer’s dementia abandonment family”

The most frequently used search terms that bring you here, besides the title of the blog, are:

“bradykinesia or slowness of”
“for mom she noticed”
“dementia calendar”
“dementia quote”

I hope we continue to build community and find ways to be there for each other in our search for help.

Blessings,

Rev. Katie

Never Prepared

No matter how much you know about dementia, I don't think you are ever prepared for how it progresses. I know the disease gets worse. I know there may be a day when my Mom does not know who I am. I know her ability to do everyday tasks is diminishing. Yet the changes of dementia catch me off guard every time.

The other day Mom called to me for help with something. I went into her bathroom and found her staring at the sink. She said "I don't know how to turn the water on."

That caught me by surprise. She had forgotten how to push the lever up to get water.

Every time something like that happens, a vision of the future goes through my head. I worry that one day when we are not home she will not be able to get a drink of water. I wonder what will be the next thing she can't remember how to do. Might she forget how to open the drawer? I know she has already been having a hard time with brushing her hair.

Equally confusing is the fact that this progression varies from day to day. She has not completely forgotten how to turn on the water, it happens sporadically.

Even though I am never quite prepared for these changes and it scares me when they happen, after the initial shock I am able to be in the moment. We can only deal with what is happening at the time, worrying about the future does not help.

At times like this I am grateful for the relationship we have and that Mom feels comfortable enough to ask for help when she needs it. And often she has a great sense of humor and laughs about things she can't remember or when she jumbles words together.

Who knows what will come next. I know I won't really be fully prepared for it, but I also know our family will work with what we have.

Blessings,

Rev. Katie