Eye on New Mexico – Featuring Dale Perini

Posted at Oct 22, 2018 1:03 am

This is some of the latest information on Alzheimer’s from the Alzheimer’s Association in New Mexico. My dad is speaking about caregiving. Check it out.

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Untangling Alzheimer’s by Tam Cummings

Posted at Jun 23, 2018 3:50 pm

This video is 1:47 minutes, but it is well worth watching. I wish I had seen the video 15 years ago. It’s important. I would suggest watching it all the way through, because it has some vital information at the end regarding dealing with loved ones. If you’re a caregiver, know a caregiver, or know someone with any form of dementia (and 1 in 3 seniors will develop dementia), then you need to watch this video!

Reference Material

Activities of Daily Living and Instruments of Activities of Daily Living

One of the ways in which we can determine how well a loved one is doing and one of the ways to communicate with a doctor is using an Activities of Daily Living scale and an Instruments of Daily Living scale. In addition, many agencies use not being able to perform 2-3 ADLs as a prerequisite to receiving assistance. It’s also a good gauge of where your loved one is. I pulled this information from https://www.payingforseniorcare.com/longtermcare/activities-of-daily-living.html. This website also has links for potential finding assistance programs to help with eldercare. I have not used it so I can’t guarantee the outcome, but it’s a place to start in your research.

Here’s some general information and a basic scale developed by the AARP and PBS.org. Please note that there are other scales as well that might be helpful, which I have links to below. 

What are the Activities of Daily Living (ADLs)?

The Activities of Daily Living are a series of basic activities performed by individuals on a daily basis necessary for independent living at home or in the community. There are many variations on the definition of the activities of daily living, but most organizations agree there are 5 basic categories.

1. Personal hygiene – bathing/showering, grooming, nail care, and oral care
2. Dressing – the ability to make appropriate clothing decisions and physically dress/undress oneself
3. Eating – the ability to feed oneself, though not necessarily the capability to prepare food
4. Maintaining continence – both the mental and physical capacity to use a restroom, including the ability to get on and off the toilet and cleaning oneself
5. Transferring/Mobility- moving oneself from seated to standing, getting in and out of bed, and the ability to walk independently from one location to another

Whether or not an individual is capable of performing these activities on their own or if they rely on a family caregiver for assistance to perform them serves a comparative measure of their independence.

What are the Instrumental Activities of Daily Living (IADLs)?

Instrumental Activities of Daily Living are actions that are important to being able to live independently, but are not necessarily required activities on a daily basis. The instrumental activities are not as noticeable as the Activities of Daily Living when it comes to loss of functioning, but functional ability for IADLs is generally lost prior to ADLs. IADLs can help determine with greater detail the level of assistance required by an elderly or disabled person. The IADLs include:

1. Basic communication skills – such as using a regular phone, mobile phone, email, or the Internet
2. Transportation – either by driving oneself, arranging rides, or the ability to use public transportation
3. Meal preparation – meal planning, cooking, clean up, storage, and the ability to safely use kitchen equipment and utensils
4. Shopping – the ability to make appropriate food and clothing purchase decisions
5. Housework – doing laundry, washing dishes, dusting, vacuuming, and maintaining a hygienic place of residence
6. Managing medications – taking accurate dosages at the appropriate times, managing re-fills, and avoiding conflicts
7. Managing personal finances – operating within a budget, writing checks, paying bills, and avoiding scams

ADL/IADL Checklist

ADLs / IADLs Requires No
Assistance
Some
Assistance
Needed
Complete
Assistance
Needed
Not
Applicable
Bathing        
Dressing        
Grooming        
Oral Care        
Toileting        
Transferring        
Walking        
Climbing Stairs        
Eating        
Shopping        
Cooking        
Managing Medications        
Uses the Phone        
Housework        
Laundry        
Driving        
Managing Finances        
Totals        

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

ADL/IADL Checklists/Tests with Point Systems

Katz ADL_LawtonIADL – measures on a scale of low functioning to high functioning

The Lawton Instrumental Activities of Daily Living IADL Scale – measures of a scale of dependency to independency

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Writers are Amazing – Autographed Books to Help Fight Alzheimer’s

Posted at Apr 14, 2018 3:09 pm

What’s Going On?

I finally get to share a really neat project that I’ve been working on! The Alzheimer’s Association: New Mexico Chapter is hosting a gala to raise money for the Alzheimer’s Association. I attended last year and it was SO MUCH FUN. I asked if they might be interested in some AUTOGRAPHED books to auction off…cause I have a few really amazing author friends. They were so excited.

So, I sent out a few emails to authors who are some of my biggest fans. Oh my goodness. I expected to get 20-30, and I received over 200 autographed books!!! This is me and my dad (grinning at the back) starting to go through just SOME of them!!

The authors were so generous that we’re going to do numerous silent auctions over the next few months. I received 25 books from #1 NYT Bestselling Authors, 92 books from NYT Bestselling Authors, 37 from USA Today Bestselling Authors, and more from PW Bestselling Authors, Wall Street Journal Bestsellers, Amazon bestsellers and so many more!

So…today…there will be a 1 day only silent auction (ending April 14 at 9:30 pm mountain time).


NM Chapter 2018 Dancing Gala & Silent Auction (Our First Event)

I have teamed up with the Alzheimer’s Association through the NM Chapter to create a book lovers dream! We are auctioning off 14 baskets filled with autographed books from national best selling authors and you’re not going to believe who! All proceeds go toward this amazing organization (split between the local and national organization), supporting dementia caregivers, awareness, and Alzheimer’s research. They touch my heart and so many other families very deeply.

Our baskets are full of autographed books from authors Jamie Pope and Lena Diaz plus: 

#1 NYT Bestselling Authors George R. R. Martin, Debbie Macomber, Jennifer L. Armentrout, Lee Child, Linda Lael Miller, Lisa Gardner, Lisa Jackson, Nora Roberts, Robyn Carr, Susan Mallery, Victoria Alexander

NYT Bestselling Authors Anne Hillerman, Brenda Novak, Catherine Coulter, Courtney Milan, David Morrell, Eloisa James, Gena Showalter, Jennifer Crusie, Sharon Sala, Tony Hillerman, TR Ragan, Nancy Bush, Nicole Helm

USA Today Bestselling Authors Debra Webb, Jane Porter, Nancy Naigle, Rita Herron

PW Bestselling Author Robin Perini


Check out these Baskets

All books in these baskets are autographed by the authors.

Item # 152: George R. R. Martin’s Game of Thrones 

Includes: Signed Games of Thrones Book, House of Stark Beer Stein

Item # 115: Lee Child’s Killing Floor (The 1st Jack Reacher Book)

Includes bookplate signed Lee Child’s Killing Floor (large print), T.R. Ragan’s Her Last Da, Debra Webb’s The Longest Silence

Item # 109: Lisa Gardner’s Look for Me

Includes: Signed copies of Lisa Gardner’s Look for Me, Rita Heron’s Pretty Little Killers, T.R. Ragan’s Abducted, and Lena Diaz’s Take the Key and Lock Her Up plus a scented candle.

Item# 126: Debbie Macomber’s Any Dream Will Do

Includes: Signed copies of Debbie Macomber’s Any Dream Will Do, Nancy Naigle’s  Life After Perfect, Brenda Novak’s When Lightening Strikes and Jane Porter’s Odd Mom Out 

Item # 132: Susan Mallery Gift Basket

Includes signed Susan Mallery’s Second Chance Girl as well as branded items and mini pie kit.

Item # 129: NM Hillerman Books and Food

Includes NM Food Cook books, various chiles and spices, signed Anne Hillerman novel (and Tony Hillerman novel signed by his daughter, Anne)

Item #155: Lisa Jackson’s Suspense Basket

Includes signed Lisa Jackson’s Ready to Die, Chosen to Die, David Morrell’s Murder as a Fine Art, Lisa Jackson and Nancy Bush’s Something Wicked

Item # 137: Nora Roberts Autographed Novel, Year One

Includes: signed Nora Roberts’ Year One, Sharon Sala’s Betrayed, Debra Webb’s Keeping Secrets, mug and more.

Item # 142: Fifty Shades of Purple (NYT Edition)

Contemporary Romance Lovers basket includes signed Courtney Milan’s Hold Me, Trade Me and The Duchess War, Jennifer Armentrout’s Moonlight Sins, Linda Lael Miller’s The Marriage Charm, Robyn Carr’s The Summer that Made Us as well as champagne, chocolates, sleep masks, candle and massage oil.

Item # 119: Robin Perini’s Forgotten Secrets

Includes: Alzheimer’s Association goodies and a book in which a person living with Alzheimer’s is the witness to a kidnapping. (10% of all royalties received donated to the Alzheimer’s Association.

 

Item # 168: Gena Showalter
Young Adult Basket

Includes signed copies of Gena Showalter’s Lifeblood, Everlife, Firstife and more.

Item # 148: Christmas 
in April

Includes signed Victoria Alexander’s What Happens At Christmas, Jamie Pope’s Kissed by Christmas, Nancy Naigle’s Hope at Christmas, Nicole Helm’s True Blue Cowboy Christmas, hot cocoa, tea, mug and Alzheimer’s ornaments.

 

Item 161: Jennifer Crusie Spanish Language Basket

Includes signed Jennifer Crusie’s Miénteme, Tentación, Extraños Amantes, Loco Por Ti, Una Apuesta Peligrosa, and La Falsificadora and bottle of wine.

Item 190: Eloisa James’ Gift Basket

Includes Eloisa James books, decorative cupcake, shaped jar, cupcake shaped ceramic bank and much more. Read more…

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If I Had Five More Minutes …

Posted at Sep 29, 2017 9:44 pm

By Dale Perini

My wife, Karen, whom I have been married to for 55 years as of February 9, 2018, is afflicted with Alzheimer’s. I took her to see a Neurologist for the first time in 2004. He said her only problem was the ability to focus, which supposedly happens to a lot to long term teachers. She had taught Home Economics in Junior High School for 21 years. Later, I took her to a Wellness Center in Houston. Some friends suggested we consider she may have a hormone deficiency. Then I took her to the Mayo Clinic and we were told she just had mild cognitive impairment. Finally, on our 2nd visit to Mayo Clinic we were told she definitely had Alzheimer’s. That was in 2007.

Things were really pretty good in the beginning. She could travel, feed herself, bathe herself and take care of herself. We went through the normal stuff most families do in the beginning: the same questions over and over, wanting to go home, and not really knowing who I was or who any of her children or grandkids were. She was on Aricept and Namenda and I feel like those drugs may have given us a little more time together. They don’t cure anything, but seem to hide the symptoms for awhile. She also took part in an experimental drug program with a neuroscience medical group. The first couple of years we don’t know if she received the experimental drug or the placebo, but after a couple of years the drug seemed to be working and she was given the real medication. And then 2014 happened …

At the beginning of 2014, Karen was probably in the 2nd or 3rd stage of Alzheimer’s. By July of 2014 she was in the 7th Stage! She could no longer perform any of her daily functions, but most importantly, she forgot how to talk. I literally watched her leave me and our family a day at a time.

If could have just five minutes of my Karen back, what would I say? A wonderful Social Worker with Hospice (Karen has been on and off Hospice twice) gave me the answer and I have seen a booklet at our church that says the same thing.

First, I would ask her forgiveness. I wish now all the crazy things I said or did that hurt her, I wish I had been compassionate enough to have left unsaid and undone. I know that is impossible because we are human, but I would ask her to please forgive me. That I was so sorry that I ever hurt her in any way.

Second, I would tell her I forgave her for anything she ever did to hurt me. But you know what, I can’t really remember one thing she ever did to hurt me. I can only remember the times I was the dumb one!

Third, I would tell her thank you! Thank you for all she has done to give me a wonderful life. Thank you for two beautiful children, Robin and Stephen. Through them we have a beautiful daughter-in-law, Jodi, and three of the greatest grandkids ever, Haley, Hayden and Lanie. Thank you for just being Karen! If I could go back to the Spring of 1962, I would do it all over again in a minute.

Fourth, I would tell her how much I love her. I think I have done that every day of our lives but I would make doubly sure I did and I would do it even more often. I still tell her that everyday. I’m not sure she hears me or understands me, but I hope she does. Karen has been very easy to love. She is one of the kindest, sweetest persons I have ever known.

Finally, I would tell her good-bye! I would tell her I will never forget her and it is OK to leave me. We will always be together in each others’ hearts. And, mainly because of Karen, we both know we will get to spend eternity together because we both know Jesus Christ is the Son of God and died for our sins. Such a simple thing we both need to know and believe to get to spend eternity together.

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Lisa Genova – What You Can Do to Prevent Alzheimer’s (TED)

Posted at May 28, 2017 4:17 pm

This presentation is worth watching and linking to. There are so many truths about Alzheimer’s here. 

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USA Today’s Happily Ever After Blog Featured Robin Perini’s Hope … a World Without Alzheimer’s

Posted at Jul 20, 2016 2:03 pm

I’m so honored that USA Today chose to feature an article about my inspiration for my latest book, Forgotten Secrets and my efforts to raise money for the Alzheimer’s Association!

Robin Perini’s story of hope … for a world without Alzheimer’s

MomandMe

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Alzheimer’s Patients Can Fool Us!

Posted at Jul 20, 2016 1:55 pm

In the very earliest stages, our loved one can really fool us. They are so normal in so many ways we don’t realize the subtle changes. Looking back, although I didn’t really think about it at the time, Karen changed her behavior in very small ways.
 
For example, she gradually stopped cooking. I think she had a hard time selecting the right ingredients. We started eating out a lot — not fancy places — just quick food restaurants like Taco Bell, MdDonald’s and Village Inn, — places like that. Also, Karen got to where she would not order her own food. She would always say “I just have what you’re having” or “why don’t we just share”.
Brain Decline
 
One of her favorite expressions became “I may have told you this before ….”. I’m sure she realized she may be repeating a statement or question. I have been told the more intelligent a person is the more creative they can be in concealing their forgetfulness. 
 
In her book, UNTANGLING ALZHEIMER’S: THE GUIDE FOR FAMILIES AND PROFESSIONALS (A Conversation in Caregiving) by Tam Cummings, PhD, Gerontologist), Dr. Cummings states that the brain is – “an organ whose estimated 100 billion brain cells perform trillions of activities each nanosecond.” The brain’s complexity helps explain why the disease of dementia can take so long to be noticed. Even losing a few hundred thousand brain cells a day wouldn’t be noticed!!
 
If it’s any consolation, I’m not sure our loved ones realize a change is taking place, at least I hope not! On only three occasions did Karen mention her concerns. Once with our daughter, Robin, when she said, “I don’t want to be a burden to you and your dad!” after Robin wrote a note to help her remember where to meet me. On another occasion, she started crying and said to me, “Why don’t I know things!” When the Doctor at Mayo Clinic in Scottsdale, AZ told us Karen had Alzheimer’s, Karen started crying. Even now, with her in the Seventh Stage, we try to be careful what we say around her because I’m not sure what will ‘get through’ and she will understand. Remember, our loved ones cannot change, only we can change!!
 
Dale Perini

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Is it Alzheimer’s – Not an easy question or answer!

Posted at Jul 13, 2016 1:08 am

Our family knew something was not quite right with Karen and at the advise of one of my closest friends who was a Doctor, she was seen by a Neurologist in the largest city near us. The Neurologist told us Karen definitely DID NOT have Alzheimer’s. His diagnosis was that Karen just lacked concentration and needed to focus more, a common problem among long term classroom teachers who had to divert their attention from student to student on a daily basis. This was in 2004. 

Around that time we told her General Practitioner about Karen’s memory problems. He told me in confidence that she could be in a nursing home in a year. Shortly after that we moved to another city to be near our daughter (right across the street actually, which ended up being a blessing). After a couple of years with a new General Practitioner and a steady decline, one visit her GP asked her, “Well, Karen, how’s your memory!!” I knew right then she was in the wrong place! At that time she didn’t even know what he was talking about!Doctoring.

She was not even diagnosed with Alzheimer’s on her first visit to Mayo Clinic, but “Mild Cognitive Impairment.” And you should all know, not all doctors know anything about dementia. Her Dermatologist once asked me how she was doing. I told him she was very easy to care for and not aggressive at all. His comment was that nice people become nicer and mean people get more aggressive. I knew that WAS NOT TRUE. The point is get your loved one to a Doctor who specializes in or is aware of the problems of dementia.

We were fortunate enough to get Karen in a study of new drugs for Alzheimer’s. She was given verbal tests, spinal taps and brain scans. We don’t know if she got the real drug or just a placebo, but after a couple of years the drug was proving to be somewhat effective and they put her on the “real deal”. She was in that study for five years until she got so bad she couldn’t communicate.

Get your loved one to a Doctor who specializes in Dementia. That may mean you will have to leave the GP you trusted and loved so many years, but you need someone who understands dementia, Alzheimer’s and long journey you will be traveling.

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Our Alzheimer’s Journey: The Unnoticed Early Stages

Posted at Jul 1, 2016 4:21 am

_DSC6067 8x10My wife, Karen, of 58 years is 75 years old and started showing signs of mild cognitive impairment in her early 60s. One of the first things I noticed, as a Junior High Home Economics Teacher, that she was always the last person to leave school. Sometimes I would drive by after dark and her car was still in the parking lot. Even the Principals were gone! Since she taught cooking and sewing in those days, I just assumed she was getting her kitchen ready for the next day or correcting sewing mistakes. Or was she doing things more than once, forgetting she had already done them?

One evening, playing Trivial Pursuit with a good friend and his wife, Karen kept asking about their new grandsons. She would ask the same question, occasionally. My friend, a Doctor, called me the next day and asked me if I noticed anything unusual about Karen. He was concerned about her inability to keep the information straight about their grandsons. Anyway, he suggested I take her to a Neurologist for evaluation which I did. The Neurologist told us she was fine, just not concentrating as was the case of many more experienced teachers since they had to quickly change their focus from student to student.

On another occasion about this time, we were in a large mall and always made arrangements to meet a certain place at a certain time. At the designated time, Karen wasn’t there. After several minutes I went looking for her and found her walking around, looking for me. She was a little perturbed that she couldn’t find me. She had even been out to the car (she still had her own set of keys) and waited for me. I thought perhaps I had better listen better!!

As all of our life was perfectly normal at that time, I just dismissed these situations as nothing unusual. In retrospect, I think Alzheimer’s Disease was well underway destroying cells. According Untangling Alzheimer’s: The Guide for Families and Professionals (Untangling Dementia – A Conversation in Caregiving Book 1) a normal adult brain weighs approximately three pounds and has 100 billion cells. the brain then shrinks to one pound during the full course of dementia. In the beginning of course, a few million cells here and there aren’t noticed. Unfortunately, it’s only the beginning.

Dale Perini

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Walk to End Alzheimer’s Is Here (Albquerque, NM)

Posted at Sep 26, 2015 2:42 am

IMG_0322September 26 is the day of the Walk to End Alzheimer’s. I’m walking in honor of my mother, Karen Perini, and in honor
of my father, whose love and devotion of her epitomizes the very definition of hero.

I have a great team who has agreed to take part with me. Here’s the Team Perini Page. 

I’ll be hanging out in Albuquerque with a purple pony tail and a balloon.

Here’s the route. (Direct Link to Print). If you want to come out and cheer us on. You’re welcome. 

Alzheimer's Map

There’s still time to donate if you’re interested. I will tell you that the Alzheimer’s Association has been a God-send to me and my family. I highly recommend this organization if you’re facing dementia or if you have a loved one with demential. To donate, click on Dale Perini’s Walk Page.

Bless all of you who are patients, caregivers and loved ones. This is a difficult journey, but we are not alone.

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Walk to End Alzheimer’s!! – Get Involved! Please!

Posted at Aug 16, 2015 2:15 pm in

Dear Friends and Family,

This isn’t my usual type of post, but I wanted to share something with my wonderful reader and writer family! One of the reasons you haven’t seen a book from me, and won’t for a bit longer (though I’m working on Rafe’s story from the Carder Texas books), is that I have been helping take care of my mother, who has Alzheimer’s. I thought I’d let you know, but also ask for the support from you wonderful readers.

11206572_10205466894345998_2557114747271998682_oI’m joining the Alzheimer’s Association Walk to End Alzheimer’s® on 09/26/2015. I’ve committed to raising awareness and funds to support Alzheimer’s care, support and research, and of course, in honor of my mother. I need your help. Together, we can become an unstoppable force against Alzheimer’s disease. You can help in three ways:
1. Join me in the fight against Alzheimer’s by walking with me
2. Help me reach my goal by making a donation to my fundraising page.
3. Join a walk in another location, or even start a team!

The Alzheimer’s Association has helped my family so much throughout our journey. I can’t begin to tell you what their classes, their support groups, and just their resources have meant to our family. The research–well, that goes without saying. I hope to make a big contribution in the fight against Alzheimer’s by reaching my team fundraising goal of $2,500.00, and I’d be so grateful if you would join or sponsor me. Your support of Walk to End Alzheimer’s will help the Alzheimer’s Association to enhance Alzheimer’s care and support and advance critical research for all those affected by this devastating disease.

We all have a reason to end Alzheimer’s. Please visit my fundraising Web page to sign up or to donate today.

Hugs to all of you…and please, if you are so moved, pass this post and link on!

Happy reading everyone and I’m working on my new books as fast as I can!!

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