Sunday, October 3, 2010

Welcome to our House

This is the house I grew up in, since the day I was born. It has changed a lot over the years in order to accommodate our family at different stages. My parents put an addition onto the house about fourteen years ago so we could have more space for our large family at Sunday dinners. They put in a therapy pool five years ago so my mom could exercise, even with her heart condition. Last August my parents turned part of the addition on the first floor into a fully accessible bedroom and bathroom for my mom.

This is now the house that my husband and I will raise our six year old son in, and probably the house my parents will never leave.

This house has seen new babies, pets, numerous weddings, an ordination, anniversaries, cancer, various illnesses, worry, arguments, and immense joy.

In this house, my mom took care of me, my four siblings, and her grandchildren when we were sick. My husband, son and I moved in a year ago and we are here to help care for her as she lives with this illness. Well, really, we are all here to care for each other because even though Mom has dementia, she still has much to contribute to this family and world.

This blog is a reflection on what it is like to live in a house with three different generations trying to deal with dementia. I am writing this blog with the permission and enthusiasm of my mom, dad, husband and son. We realize that what one of us does affects us all and in that spirit, we try to be as collaborative as possible.

We have a covenant in our house, a promise of how we will live together. It is a covenant which is adapted from a popular Unitarian Universalist church covenant written by James Villa Blake:

“Love is the Spirit of this family,
and service is its law.
This is our great covenant:
To dwell together in peace,
to seek the truth in love,
and to help one another.”

We believe that help extends outside the walls of our house and we hope this blog helps many of you out there dealing with the same thing.


Rev. Katie


  1. What a great idea, Katie, and a beautiful first post! I look forward to reading your reflections!

    I had a very different experience with my father's dementia, which began to set in shortly after my parents divorced, when I was a teenager. I saw him regularly for a few years, on weekends, but never really talked with him about what he was experiencing - and I talked very little with my family (immediate and extended) about what we were going through together... When things got so difficult that he couldn't take care of himself, he ended up living in a nursing home several hours away (his medical team thought it was treatable, perhaps a traumatic brain injury, so he was transferred to a facility that could offer rehab - but it was most likely alcoholic dementia, or Wernicke-Korsakoff syndrome, and the efforts at rehabilitation didn't work).

    With the distance and my youthful discomfort with the situation, I didn't see him again for several years. When I was finally able to work through my own feelings (grief, confusion, anger, etc.) to see things more holistically, beyond my own experience, I reconnected with him; by that point, though, his particular illness had rendered him unable to speak, and I couldn't tell if he was connecting with me, too. Only when it was too late did I realize what a gift it would have been, for both of us and for our whole family, to be able to journey with each other through his illness...

    Your reflections will be a great gift not only to yourself and your family, but to the people who will follow your journey(s) online. You are such a blessing, Katie! I'm so glad you're doing this! :-)

  2. Thank you for sharing your story Deb. I was hoping this would be a place where we could all share how this disease affects our life, because it does, even if we are not able to be living with our loved one.

  3. Katie;

    I'd suggest you consider speaking to the Docs about Lewey Body Dementia - little understood, only recently classified. It is dementia with Parkinsonian traits... and the meds for Alzheimers and Parkinsons need to be managed differently... my mother-in-law had LBD.

    All the best - thinking of you.

    Linda Thomson(Meadville MRP student)

  4. Katie-
    Diggitt sent me a link to your blog. I don't know if you've found a spiritual community in Westchester yet for you and your family, but please know you are more than welcome in Mount Kisco.
    in peace,

  5. Katie
    what a beautiful tribute to your life, your family and your accomplishments. this is but one of the many things that you are destined to do. You are all nuturing your mother and each other as best you can. how fortunate she is to be cared for and loved by so many.

    Chris Vandenberg

  6. Thank you for the support everyone!

    @Linda, we have gone back and fourth with Lewy Body and they still are unsure if that is what she has, although to us it sounds highly probable. She is taking meds for Alzheimer's and Parkinson's currently.

    @Michael, we live in Ohio, but thank you so much for the offer. I am at West Shore Church actually and my parents are members there too. The church and UU faith has been such a help for us in this time.

    @Chris, thanks. Friends like you and the rest of the knitters help Mom every week. We are so blessed to have you all in our lives.

  7. Katie
    Thank you for what you, as a family, are doing and thanks for sharing it with a broader audience.
    My father-in-law, who suffers from Alzheimer's, lived with my wife and I until his dementia advanced to a point where, we all agreed, it was for him to move into a facility where caring professionals, who got to go home after their shift, could better meet his growing needs.
    We now are living with my 86 year old mother, who is cognitively competent, but has slowed in thinking and has physical problems related to a stroke. We share duplex like house with her and my sister.
    Three days a week, my sister's young grandchildren are here for child care.
    This year I am unemployed as aI finish my requirements for a Masters of Divinity and the denominational fellowship process. my wife meanwhile is serving as a Resident Chaplain at a residential hospice facility.
    It is certainly a time of multi-layer exploration of what words like compassion, care, and love mean and how we manifest them in the world.
    As a Unitarian Universalist and will be minister, I add to all that pondering, questions about what really is at the center of that web of all existence of which we are a part? How do I serve my neighbor and my family? What does "interdependent" really mean?
    Again thanks for making such questions more public.
    Blessings to you and yours,
    Dennis Reynolds

  8. Hi Dennis,
    Thank you for your kind words.

    It sounds like you all have a lot going on in your family right now. It is a wonderful but not easy path. I hope your larger community is able to help you all.

    I have faith that at the center of the web of all existence is love and somehow it will prevail and we will find the help we need.

    I too struggle with the question of how to serve neighbor and family and have had to make hard career choices on that front. At times ministry and life are a leap of faith, believing that somehow, if we do the best we can, things will work out. It does not mean things will be happy or easy all the time but they will even out.

    When in doubt or filled with worry, I follow my Dad's advice to live in the moment because that is all there really is.

    Blessings to you and your family,

    Rev. Katie