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Life as Sandwich Fixings: Facing Care for a Parent with Dementia & a Family with ADHD
Lately, I have been a mom of few words, few articles, and little enthusiasm. I must apologize. I have recently joined the ranks of 44 million Americans who provide care to an adult older than 18 years of age. I have added another job description to the power-mom label –caretaker of a parent with dementia. Over the last several weeks, my deepest concerns have been confirmed- the bizarre and confused behavior of my highly educated dad is the result of Lewey Body Dementia. Akin to both Alzheimer’s and Parkinson’s disease, Lewey Body Dementia is associated with confusion, hallucinations, depression, and Parkinson’s-like characteristics including rigidity, a shuffling gait, and a blank facial expression. We, my mom and I, had hoped that the enlarged ventricles in my dad’s brain, revealed by cat-scan, were causing the confusion, but as cogwheeling settles in- Lewey Body Dementia appears to be the more likely cause.
As we prepare for what is to come, I fight to make this journey meaningful. I struggle to balance my immediate need to grief the loss of who my father was and would have been, with the day to day need to set a sane example for my children. How can I best make this path an opportunity to teach my children about love, empathy, tolerance, and optimism? How can I heal my own angst about things unsaid, when my dad can no longer understand and remember? How do I honor my Dad with the care he deserves, while still keeping my sanity as a wife and mother of 5? How will I balance the diverse needs of my children with ADHD with needs of my aging parents? How will I manage it all? Can I manage it all? Or how will I explain to my mother that I cannot provide the care and assistance? Then what?
These questions weigh heavy on my heart, but in the coming months, I am certain the boat will begin to right itself. Care routines will be formalized- I will have those difficult conversations- I will find my sense of humor again. But mostly, I will embrace the good moments I will have with my dad, and in so doing, model the love I intend to teach.
I ask for your patience, your advice, and your prayers- and well any good jokes, as I seek to balance the needs of all while modeling empathy, love and optimism for my family.
Candace
Posted: April 10th, 2009 under ADHD PowerMom's Journal, Values Parenting.
Comments: 6
Comments
Comment from Kaye
Time: April 11, 2009, 4:28 pm
Hi, I wanted to let you know you’re not alone and you’re in my prayers 
What a blessing that you and your mom have each other! I know that made things much easier for both my parents when my dad was on hospice with Parkinson’s Disase.
My website is specifically for information and encouragement for the Sandwich Generation, including those dealing with Alzheimer’s Disease. As a result, I’ve been blessed to “meet” several writers who are excellent resources when walking along this path.
David Thomas is a 60-year-old doctor specializing in psychiatry. He was diagnosed with Lewy Body Disease (LBD) in October 2007. His website should be extremely useful to you as he has many resources specific to Lewy Body Disease, along with other articles of interest, humor, and personal articles about how he is doing. I am always so impressed with his great attitude as he continues to reach out to help others while himself dealing with this. knittingdoc.wordpress.com
Bob DeMarco, Alzheimer’s Reading Room, While caring for his mom who has Alzheimer’s, he is continually finding interesting and informative articles! I really appreciate his research! alzheimersreadingroom.com Twitter – @AlzheimersRead
Alice and Bill also have a site that focuses on research and resouceful information with a focus on Alzheimer’s Disease. They are constantly reporting useful articles that help me and others dealing with this Disase. agingparentsauthority.com Twitter- alzheimers98
Denise Brown has a website that focuses on the needs of caregivers and can be especially helpful for new or overwhelmed caregivers. She offers a place to go for help to “Manage The Stress ~ Make The Decisions ~ Discover The Meaning.” You’ll find plenty of useful material at her site, and if you want more, she does offer one on one counseling sessions. caregiving.com Twitter – @caregiving
I wrote a book review on, “My Journey Into Alzheimer’s” about Robert Davis who was diagnosed with the disease. It was informative, encouraging, sad, hopeful, and definitely requires a box of tissues as you read it. My own dad was on hospice and dealing with some similar issues as I read it and it really did help me. sandwichink.com/dementia-one-mans-journey
For more resources, Mary Emma Allen has a list of 13 Blogs about Alzheimer’s that look interesting. I’m going to check them out as well blisstree.com/articles/thursday-thirteen-13-blogs-about-alzheimers-117/
I hope this helps a little. Do pop over and say hi or come visit us at Twitter. There’s quite a bit of support there as well
Kaye – Twitter – @SandwichINK
Comment from Kaye
Time: April 11, 2009, 4:48 pm
I almost forgot, Caregiving’s site has a great article about an upcoming HBO special, “The Alzheimer’s Project” airing May 10-12. – caregiving.com/2009/04/hbo-to-air-the-alzheimers-project-may-10-12/comment-page-1/#comment-1297
Comment from Jennifer Otteson
Time: April 12, 2009, 4:32 pm
I feel for you. Just 2 yrs ago I had to take care of both my parents. One was fighting ALS and one had MS. Had to move in with them to help care for them. Although I had others coming in everyday to help, it was very overwhelming. My mother (the one with MS) struggled with confusion and dementia as well. It was hard to see her lose almost all her memories. But there were good times too. She never lost her sense of humor; kept it till the end. Enjoy the good times with your dad. Something to cherish later on.
Comment from Katharine O’Moore-Klopf
Time: April 13, 2009, 8:17 am
My thoughts are with you. As I read your post, I was looking through a window into my future. My in-laws live with my husband and me and two of our children. They are 74 and 73. She’s fine, but he, who has untreated severe ADHD, is almost intentionally shutting himself down, deciding that he’s lived long enough. We shall see how things go.
Comment from Gina Pera
Time: May 2, 2009, 12:41 pm
I’m so sorry to hear this, Candace.
As smart and resourceful as you are, I’m sure you’ll have this ship aright soon.
In the meantime, I know your father has a diagnosis of Lewy Body, but forgive me for being cynical: I’m just not that confident in our scientific/medical ability to pinpoint these causes/reasons just yet. For example, I’ve seen physicians diagnosed patients with Epstein-Barr, Chronic Fatigue, and Fibromyalgia when really the patients have been, say, extremely magnesium deficient or suffering from copper overload.
That is a simple example and doesn’t apply to your father’s case. But there is simply too little cross-disciplinary knowledge when it comes to neurocognitive disorders. I live around scientists and medical specialists, and many have very narrow tunnel-vision. For example, it’s rare to find a sleep-clinic expert who will acknowledge the role that ADHD can play in sleep challenges, including sleep apnea and Restless-Legs syndrome. They will prescribe CPAP (despite many people with ADHD not wanting/remembering to use them) and all kinds of experimental medications (often with dire side effects) before they will ever diagnose/treat ADHD. It’s almost like some kind of territoriality/ego thing.
So, when I read the symptoms of Lewy Body, it makes me wonder — of course you’ve probably thought of this — if your dad could have some kind of advanced-stage dopamine/ADHD issue. We all lose dopamine receptors as we age. And many of the symptoms of senile dementia seem to be happening in the same regions as those of ADHD.
If he hasn’t been given a trial of stimulants or at least a “stimulating” antidepressant, I wonder if you might want to talk to the doctor about it — starting with a very low dose, of course, in case he becomes agitated.
At any rate, I would just encourage you to know that physician-specialists often have blind spots and often don’t know what the next physician-specialist next door knows. It’s a sad fact.
I wish you and your family the best,
Gina Pera, author
Is It You, Me, or Adult A.D.D.?
Comment from R6 lady
Time: July 2, 2010, 8:55 pm
I wish I could write like you as Margaret Laurence once said “When I say “work” I only mean writing. Everything else is just odd jobs.”
Sent from my Android phone
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