Part of the St. Dymphna Ministry, each week I will post an Advent reflection to help guide us through this season as caregivers, as those living with dementia, and as a community.

Week Three

As I get older, the memories of Christmas pasts, and how it has changed throughout the years grows stronger. Thoughts about what Christmas “should be” battle with thoughts of what it can become. There is hope, and rejoicing, the anticipation grows stronger than the sadness of what has been lost and the anxiety that remains as I remember God calls us into the light and to become the light.

John 1:5 “The light shines in the darkness, and the darkness has not overcome it.”

1 Peter 1:7 “Cast all your anxiety on God, because He cares for you.” 

This week we will experience the darkest day of the year. It is fitting that this third week of Advent opens with Gaudete Sunday, a time when we are called to rejoice. A rose-colored candle is light signifying to all of us that the light of Christ is within us. We should rejoice with that great internal light the beauty of this time and of the coming Christmas season. As caregivers anxiety can frequently be the greatest darkness that works to overcome each one of us. Moments happen when we fall to our anxiety and despair, but we must remember that God cares for us and that He is always with us. During this week may we find the light of Christ within each one of us, and in those we care for. May we experience the depth and width of this season as we recognize that even though this season of stillness is partnered with our societal season of stress and worry, God is our greatest collaborator. With Him we can discover what we need to become the light of others in times of loss, stress, and hopelessness. He cares for us as we accompany those who are dying, sick, or struggling. 

Heavenly Father, may this week of rejoicing and light remind us why we have walking this caregiving journey. May we see you and know that you are with us when the compounding stress tries to engulf us in great darkness. May our childlike anticipation for Christmas carry us through and may we learn to recognize you here, with us always. Amen

Dementia Letters

This morning we have our next installment in the Dementia Letters Project from Mindy. Thank you Mindy

 

Dear dementia,

Thank you for joining us, here on earth.  I know it’s a hard place to be; people often want you to go away—you’re simply misunderstood.  I’m accepting of your company.  You’re here for a reason, right?

Your presence has changed my life.  You’ve changed my brain, although, you haven’t entered it (yet?).

I know you through many sources.  Nana was a host for you before she died in 2012.  There were times when, together, you laughed, cried, giggled, snorted, screamed—and took your clothes off in public.  She always did prefer nudity.  My relationship with Nana, once you were in her life, was more unique and explorative.  Greater love and understanding grew as I filled in, accepted, and decorated her “blanks”.

Nearly every day, I meet your hosts.  They’re as kind and patient with you as they can be.

Dementia, I know you’re here to teach us something and I have a few ideas of what that is.  You’re teaching us to question our huge egos and our contrived notion of “reality”.  Patience, empathy, flexibility, mindfulness, spirituality, radical acceptance, present moment awareness and pure love …. that’s what you’re aiming for, right?

When you come around, our worlds turn upside down.  All we can do is throw our hands in the air, scream, and liberate ourselves—hopefully joining hands with one another.

I thank you because you took away a lot of beliefs that weren’t serving me.  You’ve given me an even more vast world to explore.  I can’t imagine my life without you.

 

Sincerely,

Mindy

Dementia Letters

Today is the start of the Dementia Letters project. As an ongoing project announced originally in May, I will post letters and thoughts written by you, by those who have a story of dementia that normally would not be heard. We hear the voices of advocates, the doom, and gloom of TV specials and spots, the extraordinary, and the stigma, but the most powerful of stories come from the voices of those living with dementia, struggling, suffering at times, and basking the gifts, joy, and playfulness that also comes along. Here, on Sunday mornings, you will find a Dementia Letters post. I encourage you to write a letter, to share your story that we might learn from and/or support you. Please feel free to email me, or fill out this form if you would like to write a letter. Let us fill each Sunday of this coming year with letters from you.

So, let us kick this off with a letter by Edie.

 

Dementia

By: Edie Norenberg

What does it mean when we refer to Dementia?  Most people will respond with the concept of a person who’s confused.  Actually, when I began thinking about this topic, “Confused” seems to be the operative word.  Dementia often has the connotation of “a state of confusion in the older adult”.  What we don’t realize is it creates confusion for most who are involved with this disease as well.  

     How many types of dementia are there?  That can confuse a person right there!  Unless you have a strong medical background or become a student of the disease, you could never keep them all straight.  There are so many dynamics to dementia.  Once the diagnosis comes, what tools do we use to treat the person dealing with it?  In my career of assisting people with this disease, it has become difficult to watch spouses and co-workers come up with dignified ways to assist in the loving care of these individuals.  When we are confused about that process or any process for that matter, what is our instinct?   We avoid!  It becomes too overwhelming to think about how to adequately care for a person with this complex disease so perhaps we simply flounder and ride the wave as the disease takes its’ course.  

     Dementia is on the rise and as far as I know, this disease isn’t going anywhere anytime soon.    We need to ask ourselves, as a society, what are we doing to educate, accommodate and create a better quality of life for these individuals?  Putting them on locked units and letting them sleep their lives away is no longer an option.  We need to train specialists in the disease who will, in turn, train our workers and give families the tools they need to make this journey with their loved ones. We need to create avenues for these folks to express themselves in a way they can be understood. Creating these environments requires funding though and awareness is key!  Everyone will be touched or affected by this disease somehow.  We change the world one step at a time. Figure out how to be the change you want to see in the world.  Fund the Alzheimer’s organization, educate yourself, donate your time to a Memory Café, and keep looking for ways to affect change in the way we view and deal with this disease.  It doesn’t just happen!