Comments on: Life as Sandwich Fixings: Facing Care for a Parent with Dementia & a Family with ADHD http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/ empowering ADHD families to celebrate Tue, 27 Jul 2010 16:52:22 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: R6 lady http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-203 R6 lady Sat, 03 Jul 2010 01:55:27 +0000 http://www.powermomsunite.com/?p=610#comment-203 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 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

]]> By: Gina Pera http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-169 Gina Pera Sat, 02 May 2009 17:41:14 +0000 http://www.powermomsunite.com/?p=610#comment-169 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.? 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.?

]]> By: Katharine O'Moore-Klopf http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-164 Katharine O'Moore-Klopf Mon, 13 Apr 2009 13:17:32 +0000 http://www.powermomsunite.com/?p=610#comment-164 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. 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.

]]> By: Jennifer Otteson http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-162 Jennifer Otteson Sun, 12 Apr 2009 21:32:33 +0000 http://www.powermomsunite.com/?p=610#comment-162 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. 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.

]]> By: Kaye http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-161 Kaye Sat, 11 Apr 2009 21:48:09 +0000 http://www.powermomsunite.com/?p=610#comment-161 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 :) :) :) 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

:) :) :)

]]> By: Kaye http://www.powermomsunite.com/2009/04/10/life-as-sandwich-fixings-facing-care-for-a-parent-with-dementia-a-family-with-adhd/comment-page-1/#comment-160 Kaye Sat, 11 Apr 2009 21:28:13 +0000 http://www.powermomsunite.com/?p=610#comment-160 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 :) 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 :)

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