Busy Busy Busy

I’ve been working with a few other colleagues/friends and family members on an extension to this project. It’s very exciting! As we continue this journey we continue to find new avenues to help and be helped. The least of which is the development stages of the creation of “Paladin – Memory Advocacy Packet for Families– What I can’t do – We Can do”.

While in the very early stages, I wanted to blog to let you know why I’ve not blogged as much as I’d like to lately. I’ll continue to blog as I create a page here for updates with regard to “Paladin” and I’ll use FB and Twitter to the degree I’m literate in social networking, which is much improved since first starting this mission but still a very limited option for me.

Please stay in touch and post as often as you’d like, I do check in frequently even if I don’t always post.  Thanks so much for your support. LJ

GUEST POST

My thanks to Molly Clarke for this posting which I believe, based on my contact with many people on this journey, will be very helpful. LJ

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Alzheimer’s Disease and Social Security Disability Benefits

Molly Clarke is the Social Media Coordinator for Social Security Disability Help and regularly contributes to the Social Security Disability Help blog. Molly can be reached by email at mac@ssd-help.org.

Caring for an individual with Alzheimer’s disease can impact every part of a person’s life. While it is relatively well known that caregiving can be stressful at times, many people don’t understand the financial impact of caring for another person. Whether the person you are caring for is a parent, sibling, or distant relative, it is likely that you want what is best for him or her. Without financial stability, this can be quite difficult to do.

If you are caring for an individual with Alzheimer’s disease and can no longer support their needs, you may be able to qualify for Social Security Disability (SSD) benefits on his or her behalf. Before starting the SSD process it is best to be thoroughly prepared. The following information will shed some light on the process and the medical evidence you will need to provide to the SSA.

Disability Benefits

There are two types of disability benefits that a person may qualify for with Alzheimer’s disease. These include Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits. Your loved one may qualify for one or both types of benefits because they each have different eligibility requirements.

To qualify for benefits from either program, the person you care for must meet several basic criteria, which together, form the SSA’s definition of disability. These criteria are listed below:

The applicant must have a condition that prevents him or her from holding any type of job.

The applicant must have a condition that has lasted (or is expected to last) at least 12 months or result in death.

 SSDI Technical Eligibility Criteria

Social Security Disability Insurance is a long-term disability insurance program that is operated by the federal government and offers benefits to disabled workers and their dependent family members. Funding for SSDI is provided by the Social Security taxes that most workers pay into the system.

In order to qualify for SSDI benefits, applicants are required to have a certain number of “work credits”. Work credits are used by the SSA to measure a person’s work history and the amount of taxes that they have contributed to the program.  Exact work credit requirements vary depending on age. The general rule of thumb is that applicants must have worked five out of the past ten years in order to qualify.

It is important to note here that if your loved one has Alzheimer’s disease and is 65 or older, they will not qualify for SSDI. Instead, he or she will qualify for retirement benefits.

SSI Technical Eligibility Criteria

Supplemental Security Income benefits are distributed on a by-need basis to elderly or disabled individuals with very little income. To qualify, applicants must meet very strict financial limitations. As of 2013, an applicant’s household income cannot exceed $710 per month if they are an individual or $1,060 per month if a couple. Assets must also not exceed $2,000 as an individual or $3,000 as a couple. If the person you care for lives with you, a portion of your income may be considered as well. If your loved one for qualifies for SSDI but still falls short of these income and asset thresholds, they may qualify for SSI in addition to SSDI.

Alzheimer’s Disease and the Social Security Blue Book

In addition to meeting the previously mentioned requirements, the person in your care will also have to meet certain medical requirements. These requirements can be found in the SSA’s blue book—or guidebook of disabling conditions.

If the applicant is under the age of 65—which, as mentioned, is an SSDI requirement—they are considered to have early onset Alzheimer’s and will qualify for disability benefits under Social Security’s Compassionate Allowances program. The Compassionate Allowances program allows applicants with severely debilitating conditions to qualify for benefits in as little as two weeks.

According to the SSA’s blue book, an applicant with early onset Alzheimer’s disease must provide medical evidence of the following:

Progressive dementia

Inability to perform activities of daily living

Standardized dementia testing with a CDR score of 1 or an MMSE score of 24.

It is important that you gather all relevant medical documentation pertaining to your loved one’s Alzheimer’s and the limitations that it causes. Without medical documentation, the claim may be delayed or even denied.

 Applying for Social Security Disability Benefits

You can apply for SSD benefits on behalf of another person online (http://www.ssa.gov/pgm/disability.htm) or at a local Social Security office. When you apply, you will be asked to fill out a number of forms including the Adult Disability Report and the actual disability application. Make sure that you answer any questions with as much detail as possible. More detail will allow the SSA to see how impaired your loved one is and will make their decision easier.

It is important that you realize that your application may be denied. If your claim is denied, you will have 60 days from the date of denial to appeal the decision. While this process can be overwhelming, disability benefits are often an essential lifeline for caregivers of loved ones with Alzheimer’s disease.

For more information about Social Security Disability benefits, visit Social Security Disability Help. (http://www.disability-benefits-help.org/blog)

Northwoods Art and Book Festival

I will be at the Northwoods Art & Book Festival Saturday, August 17th, 2013 from 9:00 AM to 3:00 PM in Hackensack, MN.

I’ve participated in this event previously with my artwork and found it to be a great experience and a wonderful event. I will have a few paintings with me but my main focus will be sharing my book and visiting with folks who would like to share their story. My book will be available for purchase and  I will be available all day to sign purchased books.

If you’re looking for a way to enjoy the day in beautiful part of Minnesota where you’ll meet artisans of all genre’s join come to Hackensack. By the way, there are food vendors on site providing delicious taste treats.LJ

Books for Children

Below are two books that have been recommended by other Alzheimer’s Awareness advocate bloggers. I’ve connected to each of their blogs here as well. These books are a must read if you know of young children dealing with the dementia of grandparents or other loved ones.  

I’ve been asked by several families I’ve come in contact with on this journey if I knew of a book that might be helpful for their child. Here are just a couple and as you can see by what Lori La Bey and Sandy have posted, they are an excellent resource.

REBLOG From Lori La Bey:

I just ran across a new book every family and profession needs to have.  Please read my blog post for more details.  This children’s book has lessens for us all.

A Dementia  Book

Every Family & Professional Needs

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Here are my thoughts after reading the book. 

Keep in mind I had tears running down my face as I read the book, not because it was sad or scary, but because it explained dementia in such a beautiful and simple fashion.  I still remember forty years ago at the age of 13, when my great aunt forgot my name and who I was.  I was devastated.  No one, not even my mother had a good explanation for what was happening.All I heard over and over was,

“That’s what happens when people grow old Lori.  They go senile.  You didn’t do anything wrong.  It’s just what happens.”

http://alzheimersspeaks.wordpress.com/2013/07/03/a-dementia-book-every-family-professional-needs/

REBLOG from Sandy:

Alexandra Faer Bryan has a new children’s book, “Green Kitty.” It’s a must-read and has placed as a finalist for “Best Books 2011.” About a grandmother recently placed in assisted living and her visiting grandchild. This story weaves information and caregiving suggestions about dementia and Alzheimer’s disease subtly into the storyline of this educational and entertaining work. Green Kitty will capture the imagination of any child as it retells the laugh-out-loud true antics of the author’s family pets and farm animals. These are  amusing, earthy stories which will appeal to both parents and children. It was developed for the unique age group of 8-12 year olds. The work is one of six finalists for “Best Books 2011? in children’s fiction by USA Book News. The book was written to be educational but it is being recognized as entertaining fiction – See more at: http://free-alzheimers-support.com/wordpress/2011/12/new-childrens-book-release-green-kitty-a-grandchilds-view-of-alzheimers/#sthash.1ySHdwMi.dpuf

Thank You

I’m blogging today just to thank the many press outlets who have been so supportive over the past months with regard to my book. Area radio stations such as KLTF in Little Falls, KTIG in Pequot Lakes and most recently 3Wi in Brainerd, MN along with The Courier, Crosby, MN; Staples World, Staples, MN; Brainerd Dispatch/Her Voice, Brainerd, MN; Morrison County Record, Little Falls, MN and The Senior Perspective-Lindbergh Addition, Glenwood, MN. I’ve sent press releases to several others but I don’t receive all the newspapers or listen to all the radio stations so I apologize for not mentioning others that  have helped me announce the release of my book, book signing events and author talks. Thank you ALL!  A special shout-out to the many bookstores, libraries, care facilities and events that have provided a time a place for me to share our journey and present my book; they are all listed on my “Calendar” link here and on my website as well as my Facebook “author” page.

The exposure has been wonderfully helpful and the journalists and radio personalities have been extremely supportive.

When this journey first started I had no idea how to do this or where the road would lead. It’s led me to many places and introduced me to many people who have been willing to share their story as we all do what we can in our own way working together and sharing knowledge to win the battle against this devastating disease.

Alzheimer’s disease continues to increase and is being diagnosed in people as young as 40 and 50 years of age. It’s no longer age specific. Check out “Younger/Early Onset Alzheimer’s & Dementia” at http://www.alz.org.  There is much research being done and there is hope for better treatment and someday a cure. In the meantime we can help each other if we but share our knowledge and experiences. Please feel free to share here and/or at any of the blogs or websites I’ve linked too. I look forward to your comments. Thank you and God Bless, Lj

THREE MONTHS LATER

It’s been a little over three months since my book launch party and release of “His Name Was Merle – Our Journey through Alzheimer’s Disease”.  As I’ve mentioned in earlier posts, I’ve met some amazing people. Some of whom have prompted me to more seriously consider writing another book just so I can share their stories.

Many of them have commented, “I should write a book” or “People have told me I should write a book”.  But they haven’t done so. Several have said they could and would be willing to share enough of their journey for a chapter or two in someone else’s book. I find that very interesting and intriguing; definitely worth pondering at the very least. Perhaps that concept has already been done but even so, the stories would be unique as are all  the stories of everyone’s life and journey with dementia.

I’ve made some notes and actually typed a few pages, hmmmm. . . . let’s see what God has in mind.

Book sales have slowed a bit but that’s to be expected since I’ve not been pursuing as many signing events lately what, with all the summer work around home.  I do have a few events scheduled which include participating in “The Longest Day” fundraiser for the Alzheimer’s Foundation at Edgewood Vista in Brainerd, MN. June 21st.  I will donate $2.00 per sold book to the fundraiser and am hoping we have a great day. It sounds like a fun event but I won’t have the full agenda until later  this week.

Check out the “Calendar” page for other upcoming events. I have something every month through September at which time I plan to start making inquiries again and perhaps branch out geographically with book signing events.  Feel free to email me or comment here if you have any suggestions or questions. Lj

Is there a cure in sight?

This sounds hopeful!!!

Alzheimer's Speaks Blog

 

By Kevin Woo

Dr. Michael Devous believes that one day there will be a cure for Alzheimer’s disease.

“I think we’re going to cure Alzheimer’s disease, and we’re not far away from it,” says Devous during an interview with the Dallas Morning News. Devous is a professor and director at the Alzheimer’s Disease Center at University of Texas Southwestern Medical Center.

“Ten years ago I didn’t think so, but we’ve made tremendous progress,” he says. “We haven’t done it. We haven’t cured anyone from this disease yet, but I’m hopeful that the trials we’ve started will change the course of this disease in a positive way. There’s a mild cognitive impairment which precedes dementia. We are having clinical trials to see if removing plaque will keep (patients) from getting worse and maybe even allow them to get better.”

Researchers say that maintaining a healthy lifestyle; getting genetically tested…

View original post 97 more words

LAMAA

The Lakes Area Memory Awareness Advocates forum held at Central Lakes College June 21st was amazing!  The program was all-encompassing with regard to “Dementia: Family, Community, & Professionals Doing it Right”. JacLyn Herron, the keynote speaker and author of Singing Solo: In Search of a Voice for Mom shared her story and her mission to help people find ways to make certain their loved ones are getting the proper and best care available at every stage of their journey through dementia.

Even though I attended as a vendor, I was able to listen to all the presenters as the layout of the event was designed to accommodate vendors as well as attendees. All of the presenters were very knowledgeable and well prepared to answer questions from the attendees following their sessions. I was particularly affected by the presentation by Deborah Richman, Program Director, Education and Outreach Alzheimer’s Association MN-ND on “Learning the Language” Communication & Memory Loss. She shared how important it is to understand the person with dementia by recognizing their body language as a way to communicate; how we communicate with our body language may saying one thing while we are trying to communicate something different. She emphasized how important it is to think about all the steps there are to any particular task and how confusing it would be for the person with dementia if we say something like, “let’s brush our teeth”.  First the teeth are not “Ours” and “we” don’t brush them, second the first step to that process is to go into the bathroom, next get some water; would that be from the sink, shower or toilet? The toilet water is the most visible so ….. Perhaps we need to rethink how we relay instructions and tasks.

These are just a couple of examples of “communication”. As my son has always said, “there is communication and then there is “effective communication”. We must strive to communicate effectively  with our loved ones, especially if they have any form of dementia. Always treating them with the age-appropriate respect they deserve is crucial as well. If they are adults, speak with them as you would another adult.

A final thought as relayed by Deborah, “The real art of conversation is not only to say the right thing in the right place, but to leave unsaid the wrong thing at the tempting moment”.    quote of – Lady Dorothy Nevill

As I said, all the speakers were excellent, as was lunch, the entire format and the agenda, which, by the way, was adhered throughout the day. The vendors provided a multitude of information and opportunities for education and care options for our loved ones. I am very pleased to have been able to participate in the day and meet the amazing people who in fact are, “Doing it Right”. Thank you to all and especially to the volunteers of LAMAA for making this forum a reality, Excellent Job!  Lj

Check LAMAA out on FB at:www.facebook.com/pages/Lakes-Area-Memory-Awareness-Advocates-LAMAA

7 Stages of Alzheimer’s – 7 Levels of Dementia

7 Stages of Alzheimer’s – 7 Levels of Dementia

(repost from http://www.AlzheimersSupport)

Alzheimers is a disease with seven stages. They don’t happen sharply or over a specified period of time, everyone is different and everyone’s progression may be different. One of the symptoms of Alzheimers is dementia. As you’ll see from this list, the final 3 stages are the symptoms of dementia. Though Alzheimers is the most often cause of dementia, there are other diseases that cause  dementia, also.

THE SEVEN STAGES OF ALZHEIMER’S

Stage 1 – NO SYMPTOMS OF ALZHEIMER’S ARE SEEN.

Stage 2 – FORGETFULNESS: Very mild cognitive decline. For example, problems such as: vagueness of where familiar objects are, complaints about not remembering well, forgetting names once well known. There is however, no loss of abilities in social interactions or in employment situations.

Stage 3 – CONFUSION EARLY STAGE: Mild cognitive decline. For example, problems such as: getting lost when traveling to a familiar location; noticeably lowered performance level at work; trouble finding words and names; little retention from reading; little or no ability to remember names of new people; loss of valued objects and trouble concentrating.

Stage 4 – CONFUSION LATE STAGE: Moderate cognitive decline. For example, problems such as: decreased knowledge of current and recent events; loss in memory of personal history; decreased ability to handle travel or finances; and inability to perform complex tasks. Appropriate responsiveness to outside stimulation decreases sharply. Denial of any problem, and withdrawal from challenging situations are common.

Stage 5 – DEMENTIA EARLY STAGE: Moderate severe decline. For example: the person can no longer survive without some assistance. Patients can’t remember names of people or places in their lives. They may be disoriented about time and dates. However, they will require no assistance when using the bathroom or eating, but may need help getting dressed.

Stage 6 – DEMENTIA MIDDLE STAGE: Severe cognitive decline. For example: the personmay forget the name of the spouse and be unaware of events in his or her life. They are entirely dependent on others for survival. They may have trouble sleeping in a regular pattern.

Stage 7 – DEMENTIA LATE STAGE: Very severe cognitive decline. For example: all verbal abilities are lost and he or she needs help eating and using the bathroom. Eventually they lose ability to walk, the brain appears to no longer be able to tell the body what to do.

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The Seven Levels of Dementia

Level 1 – NO COGNITIVE DECLINE: No subjective complaints of memory deficit. No memory deficit evident on clinical interview.

Level 2 – VERY MILD COGNITIVE DECLINE (Age Associated Memory Impairment):
Subjective complaints of memory deficit, most frequently in following areas: (a) forgetting where one has placed familiar objects; (b) forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern with respect to symptomology.

Level 3 – MILD COGNITIVE DECLINE (Mild Cognitive Impairment):
Earliest clear-cut deficits. Manifestations in more than one of the following areas: (a) patient may have gotten lost when traveling to an unfamiliar location; (b) co-workers become aware of patient’s relatively poor performance; (c) word and name finding deficit becomes evident to intimates; (d) patient may read a passage or a book and retain relatively little material; (e) patient may demonstrate decreased facility in remembering names upon introduction to new people; (f) patient may have lost or misplaced an object of value; (g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.

Level 4 – MODERATE COGNITIVE DECLINE (Mild Dementia):
Clear-cut deficit on careful clinical interview. Deficit manifest in following areas: (a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of ones personal history; (c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: (a) orientation to time and place; (b) recognition of familiar persons and faces; (c) ability to travel to familiar locations. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations frequently occur.

Level 5 – MODERATELY SEVERE COGNITIVE DECLINE (Moderate Dementia):
Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouses’ and children names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6 – SEVERE COGNITIVE DECLINE (Moderately Severe Dementia):
May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and, sometimes, forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include: (a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror; (b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities; (c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur; (d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

Level 7 – VERY SEVERE COGNITIVE DECLINE (Severe Dementia):
All verbal abilities are lost over the course of this stage. Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases. Incontinent of urine, requires assistance toileting and feeding. Basic psycho motor skills, e.g., ability to walk, are lost with the progression of this stage. The brain appears to no longer be able to tell the body what to do. Generalized rigidity and developmental neurologic reflexes are frequently present.