A Battle for Love

A Grace-six months later

2009-11-30T15:45:00.003-05:00

I see it has been six months since I've visited my own blog... more on that later...

Lewy Body Dementia is a plunderer of memories. I HATE what IT is doing to my dear mom. But in her diminished state, I am finding a crack in the sadness and loss through which Grace shines through, forgiveness is no effort, beauty returns, hope is renewed and faith returns anew... all of this- a potpourri of love. And my dear father, her life partner of over 50 years is discovering and uncovering and loving and learning. God Bless them both. It has been SOOOO difficult to post here for reasons I can not find words to explain... I feel guilty to not bear better witness to this journey of which I am a part, but then I read a friends post on Facebook today that I liked very much- "Wisdom is avoiding all thoughts that weaken you." I AM there for them in the most present way I know how. I wish I could take away the profound sadness that must be my fathers constant companion. Praying to God to help do for me (and for them) what I can not do for myself. Mom's facility for speech is fading, which only makes her smile that much more special.

Mother's Day visit in the year 2009

2009-05-17T22:55:00.002-04:00

Last Sunday morning I awoke to dancing trees in my living room.  Had I known, I would not have greeted them in my boxers, unshaven, unkempt. Not that they would have cared. They were too busy wrestling with their playful, breathy master to even notice.  But I cared... well, not really. But it's not every morning, one is greeted with such an abundant welcoming. And these trees are not strangers.  They have guarded this house long before I moved in.  Coffee had to wait just a little bit longer while I lay down with my dancing trees to meditate on God's glorious bounty and vision.

After coffee, off to Westport to pick up my friends camcorder again.  It was a blessedly still, quiet, sky-blue day, perfect for a drive to the Berkshires, or anywhere. Me, myself and my simple loneliness...
I had spoken to people about this visit. About how my dad called a few days prior saying mom, (long pause, big sigh)... was really declining; about how the sadness in his voice, its fragile timber, sounding foreign, almost alien, frightened me. Yet the connection would not be denied.  God is the grease, we are the wheels. He must know this is not easy for some of his children. This new territory of despair, and fear and hope and grief and letting go.  Grief has a mind of her own. And for all the work people have done studying her, work for which I am becoming ever so grateful, to experience the fullness of her bosom up close and personal, that is the realm of the poet.
I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow
And ne'er a word said she;
But the things I learned from her
But oh, the things I learned from her
When sorrow walked with me.
--Robert Browning Hamilton

I spoke with a director at the Lewy Body Dementia Association prior to my visit and found out that when my mom thinks my dad is someone else (this visit she thought he was one of her caregivers' sisters who happens to be African American which my dad is not, nor is he female), there is a name for that- Capgras Syndrome.

The Capgras delusion (or Capgras syndrome) is a disorder in which a person holds a delusional belief that a friend, spouse or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects. It can occur in acute, transient, or chronic forms.

The delusion is most common in patients diagnosed with schizophrenia, although it can occur in connection with a number of conditions, including brain injury and dementia.^[1] Although the Capgras delusion is commonly called a syndrome, because it can occur as part of, or alongside, various other disorders and conditions, some researchers have argued that it should be considered a symptom, rather than a syndrome or classification in its own right. So I arrived and found my mom in a pleasant state of mind with my dad ever doting by her side. The visit was as special as any I have had with them. After being coaxed into taking over the role of the chef when I visit, I know need no prodding and am happy to do the honors. At one point, I was trying to do too much, carrying three bowls of strawberry shortcake into the bedroom when one slipped out of my hand and went all over me. My mom was not happy and thought it was going to explode, but she did eat hers mind you, explosion or not. On Monday (5/11), my dad and I went to the attorneys to make me his POA rather then my mom and confirm that taking out a new loan was the right course of action which it was. Then on Tuesday I accompanied my dad to his support group at Elder Services in Pittsfield where I met a man named Lou whose wife of 21 years is living with moderate stage Alzheimer's. Listening to him describe his situation, I could identify with what my dad was going through as well. Having those connections is just irreplaceable. The patient often is the last to want to get help but is the first to recognize the need for additional help for their caregiver. At least that is what I gathered from listening to both Lou and my dad. I heard my dad talk about needing to let go for the first time and that kind of tears me up but it's also a good beginning. Everything is a paradox now. Endings are beginnings, and so it goes.

Easter visit

2009-04-13T12:35:00.002-04:00

Mom looked beautiful in her bright red cotton turtleneck when I arrived at their condo in Lenox on Thursday for the Easter Holiday. The remainder of weekend she wore an assortment of pale colored yellow and lavender blouses my dad thoughtfully chose for her. It was a pleasure to prepare the Easter dinner which consisted of a Krakus Ham, Yams, Asparagus and Yellow Summer Squash. A plate adapter was purchased at Flynn's Pharmacy and Medical Supply Store to help mom with meals. Dad feeds her now as much as she feeds herself and I see how lovingly he does this but cannot escape the fact that it feels so unnatural for him. He wants her to be well enough to feed herself of course. I struggle with how much to intervene regarding his enormous effort in terms of the care-giving role he has assumed. But as he said, he does not make a distinction between being her husband/life partner and being a care-giver. He just loves and needs her that much. I helped out as much as I could moving some furniture to make room for the wheelchair to get by, cooking the meals and digging into financial matters. The joy and pain of bearing witness to this phase of theirs, and my life, can not be measured in the finite terms we are accustomed. And that makes it challenging to find comfort when words and language are so integral how we communicate. I wish and hope that my dad can do deeply into his emotional soul and find the connection with his God that will help unburden the tremendous hole being left as mom deteriorates. The camera did bear witness this weekend to moments of such precious love and caring, faith is restored in me that our transcendent God looks down on us even in times of trial and suffering, and perhaps more acutely during those times. I shot about 3 more hours this visit including some footage of my moms Hospice Nurse. I had a nice conversation with her before she left. The people that do this work are indeed angels of a sort. I know my parents had to do some work to find the right ones but the caregivers in place now are loving, compassionate and skilled people. And my mom brings out the best in them even from her diminished state. More about that the music that has been her life-long inspiration another time. Blessings and Happy Spring to everyone!

Details Philip. Details...

2009-03-31T23:55:00.004-04:00

In my first post, I reffered to my parents social worker in a rather off hand way. I must, must be more mindful of this process. If in fact I want to bear witness to what is happening in it's entirety, in a way that the blogs of other people seem to demonstrate, I must pay attention to the details... while still respecting everyone's anonymity. It's not a lie to say Social Worker, she is a LCSW but her title with the agency she works for is Caregiver Support Coordinator and even that title doesn't quite capture the relationship, the bond, the connection she has formed with my parents. That's what the documentary is for... and now to bed!

Imitation is the best form of flattery...

2009-03-31T20:37:00.000-04:00

...and for this novice film maker, it is also quite an education. On March 25th I checked out 7 documentaries from the library to watch and learn from. The titles are Sunset Story, Sacco and Vanzetti, The Emmett Till Story, Ellis Island Immigration Museum: Face of America, Harvest of Shame, Teens Dealing with Death and Mob Hit Men (2 separate titles). I was able to glean something from each one. The various styles and approaches each director used and how they went about developing their particular thematic structure. Some related information in a very basic manner while others created a world in which the viewer became immersed in. In all cases, the stories were compelling. The reality of the enormity of my task- to document a husband and wife's 50 year love affair in the midst of their battle with Lewy Body Disease- does not escape me. However, as I became an early statistic last October of the staggering downturn in the economy, the prospects of this project present somewhat of a grounding element to my hurdy-gurdy life at the moment. A sampling of Fred Wiseman's films is next on the agenda. The 8 hours of raw footage I took of them and their Social Worker last weekend is ripe for downloading!