Living Life Well with A Diagnosis

Bruce and Marikay Peterson

Yes, my wife’s diagnosis caused confusion at first. Initially we thought the short term memory loss was similar to others our age, but the tests identified a more severe limitation: Alzheimer’s

Candidly we have found many positives to this disease. It caused me to enter retirement at an earlier age than anticipated and found that I really didn’t mind missing work. The exchange from a business attitude to a more relaxed posture created a more solid marriage. Instead of me leaving an empty house to my wife(our children had moved out) at 6 am, I was sleeping longer, with less worries.

Currently we try to do something together, EACH DAY. Often times (maybe once per week) it involves an Alzheimer’s function, like our journey to Mt. Everest today. Friends have volunteered to help when I leave to play golf. It’s important to identify them before a crises, instead of after (when you can’t find them). At a recent Alzheimer’s luncheon 57 friends joined us for lunch to recognize my wife and share their concerns, to offer their prayers. You can imagine the positive impact on our entire family!

We have signed up for three/four programs that meet at the Alzheimer’s office throughout the month. We found out about Active Minds and Café Connect which encourages intellectual stimulation for seniors. Occasionally we receive free tickets to community activities. Never would we have enjoyed these many Denver activities if it were not for the diagnosis. While seeking treatment at the Anschutz Center we take pride in this wonderful expanding facility which means so much to our community. We always leave with a sense of confidence because the staff is professional while at the same time showing empathy.

Our friends have changed from a purely business and political association to new friends where we share something in common: fear about the future while coping day to day with the unknown. We enjoy our new friends as we wrestle with daily issues that are not understood by the public. We have no concerns about telling the same story multiple times or hearing a joke for the 10th time. This sincere friendship and comfort (“I understand what you’re going through”) would not have taken place a few years ago.

My wife is fully aware of her new limitations, something that might not have been admitted while working up the corporate ladder. Daily we work together to understand our feelings and how to better cope with confusion.

At this time I’m not certain of the future, but believe that this could be one of the best blessings of our retirement lives.

-Bruce Peterson

Living Life When the Diagnosis is Alzheimer’s

At the Alzheimer’s Association we often hear from families that their first reaction after a diagnosis is one of relief, because now they finally know what they are dealing with. However, what follows shortly after is a profound sense of loss at what’s to come as the disease progresses.

What many people don’t understand is that while this disease steals so much of the person known and loved by friends and family, changes can happen relatively slowly. Speech, for instance, begins to deteriorate with a person initially having trouble finding nouns and eventually, they may be unable to put sentences together.  Following step-by-step instructions or a recipe may get increasingly difficult. Balance may be impacted so falling down and dropping and spilling things may occur more often. In addition, the ability to use good judgment to make decisions may begin to decrease. That doesn’t mean life can’t be enjoyed, or trips can’t be taken or new adventures can’t be planned. Simple adjustments may just need to be made to the way you’ve always done things.

While the symptoms of Alzheimer’s disease are progressive, there is still a great deal of life to live after a diagnosis.

One man, who thoroughly enjoyed cooking in his beautifully-equipped kitchen, enlisted his wife’s help. They removed all the sharp knives, labeled drawers and moved things around so he could easily find what he needed. Then they simplified recipes and used the ones still most familiar to him so he could continue doing what he loved. Another couple who loved to dance was worried the wife’s balance problems would mean they had to stop. In fact, her dancing feet remembered all the right steps.  And yet another family switched to croquet instead of golf and now the grandchildren get out on the course with grandpa, giving them a wonderful new way to play and interact together.

Alzheimer’s is a fatal disease but it doesn’t have to bring life to a screeching halt. You can still do what you enjoy, maybe just a little differently. In fact slowing things down a bit and allowing additional time for an activity creates a more comfortable and enjoyable environment for someone with dementia . Figure out what kinds of activities are available in your area and adapt them when you can. If you enjoy visiting local museums, find out if there are hours when the crowds are smaller and whether there are docents who are trained for groups with special needs. The Denver Art Museum has a program specifically for those with dementia called Art and About that is coordinated with the Alzheimer’s Association.  Tours are offered each time a new exhibit comes to town. Walking trails designed for the sight impaired offer a unique way to follow guided walkways when balance and direction are issues for a friend or family member with dementia. If you’ve always loved to camp, try an RV instead of a tent.  A pop up camper or RV makes things easier on the care partner. More time can be spent enjoying the out of doors than on the set up, cooking and cleaning up involved with tent camping. If gardening is a special hobby, create a special bin for equipment and help mom find it each time she wants to putter with her roses. And try large-print playing cards to keep dad winning at the Bridge table. Keeping your friend or loved one busy, active, engaged and socializing may mean the disease progresses just a little bit slower. Regardless of the activity or the hobby, the real benefit is that by looking for ways to keep someone you love doing what they love, you have been given the gift of time with them to treasure.

To learn about the 10 Warning Signs of Alzheimer’s or for ways to keep a loved one active and content go to alz.org/co or call 800.272.3900

What activities do you or a loved one continue to enjoy?

The Longest Day

Last year my friends and family participated in The Longest Day on June 20, for the first time. We’ve had a Walk team for the past six first walking in honor and then in memory of my husband Bill and wanted to find a way to involve more family and friends in the cause.

Join us on June 21, 2013 for The Longest Day, as together we honor those living with Alzheimer’s disease and their caregivers.

After struggling for five years with symptoms, Bill was diagnosed with Younger Onset Alzheimer’s when he was just 57. Our journey lasted a total of nine years and he died in 2010. He was my soul mate and my best buddy on so many adventures. We camped across Colorado and into Utah, South Dakota and Wyoming. We skied resorts from Vermont to New Hampshire to Colorado to Utah and the Tetons. Even in the midst of his disease, we pushed our limits in the search for new, challenging adventures. When the Alzheimer’s Association launched The Longest Day it seemed like the perfect way to continue to honor Bill’s legacy. Along with my friends and family, we took up activities that fit best with what we love to do. My younger sister in Durango rode her horses and her road bike trainer, my parents walked the streets of Vail during what was their anniversary trip, my sister Lynne walked the trails near her home in Lakewood, and my good friend Bob and I rode our mountain bikes near Boulder for four hours. All day, somewhere in the country, our team was doing something they love to raise money and awareness in memory of Bill. Thanks to our generous friends and family, we also raised nearly $1,700 for the Association.

My mom and dad walked throughout Vail for The Longest Day.

Did I mention The Longest Day is scheduled to take place on the longest day of the year? The summer solstice occurs each year in June, this year on Friday, June 21. That means there are 16 hours of daylight from sunrise to sunset. The Alzheimer’s Association chose that day in recognition of caregivers, who like me spend every day from sunrise to sunset and into the night providing care for someone they love who is living with Alzheimer’s. The tagline for the event is “for them every day is the longest day, for you it’s just one” and it rings true. The Longest Day offers us an opportunity to give up one day to raise money, awareness and an understanding that this disease steals the person you love long before they die. We have to find effective treatments, we have to stop this disease before more spouses, children, grandchildren and friends lose people who mean so very much. Please consider forming a team this year and join us in 16 hours of doing whatever you love to help end Alzheimer’s.

Sara Spaulding,
Former caregiver for best friend, partner and husband Bill Perrin, Jr
Alz.org/thelongestday

Even A Rocket Scientist Can Be at Risk for Alzheimer’s

I retired from Mission Analysis and Design (MAD scientist) 11 years ago, having worked a diverse mission set, including Apollo, Comet Sample Return, Mars exploration and classified projects (if I told you, I’d have to kill you).  One of my favorite movies is “Dr.Strangelove”.

My symptoms were first noticed by my wife about 15 years ago, which started a search for answers.  About 3 years ago, I was diagnosed with Early Stage Alzheimer’s, soon followed with a diagnosis of the behavioral variation of Frontal Temporal lobe Degeneration, or bvFTD.

I believe FTD is the more correct diagnosis, but am attending the monthly Alzheimer’s Early Stage patient support group since my diagnoses.  I encourage anyone who has dementia to attend this or any other support group.  It is a great way to share experiences in a safe environment.  You would be surprised at how many symptoms you have in common with others.

My dementia has noticeably increased over the last couple of years.  Memory is a challenge, as is math, including simple arithmetic.  Verbal communication skills and comprehension have also significantly declined.

Difficulty completing familiar tasks can be a sign of Alzheimer’s disease.

The scientist in me can observe these things in a detached and studious way (a defense mechanism?) which helps, plus being a naturally low key person with a sense of humor.  Either that or my brain has reduced my ability to feel and/or consciously express things.  Probably some combination of all the above.

I have done some consulting for NASA, my last job ending in early 2012.  But it is clear that I can no longer contribute as I once did.  It was fun, and paid well, but all good things come to an end.

My motto is as it always has been, to love and appreciate my wife, to adapt to cognitive decline as best as possible, and to enjoy life as much as possible.

-Phil

Extreme Colorado Weather Puts Those with Dementia at Risk

As the temperature finally dips into seasonal ranges for winter, those caring for someone with Alzheimer’s and other forms of dementia should all be on notice that snow, extreme temperatures and early darkness present special problems.

A loved one with Alzheimer’s won’t necessarily dress appropriately for colder weather. Cover as much exposed skin as possible and provide several layers of lightweight clothing for easy movement, especially if plans include time outside. A hat is important since so much body heat escapes from an uncovered head and don’t forget to add a scarf to cover up an exposed neck. Mittens keep hands warmer than gloves and may be easier to help get on and off. Clips designed for skiers can help keep track of gloves or mittens that are otherwise easily misplaced or lost.

Sundowning is a term that refers to increased anxiety, confusion and even increased sleepiness due to the decreased sunlight in the winter months. Visual perception is already an issue for many people with Alzheimer’s and can cause increased confusion or disorientation in dark or shadowy environments both inside and out. Turn lights on earlier, open curtains during daylight hours and add bulbs that simulate sunlight. Install motion detector lights to help illuminate walkways around the home as darkness may fall before arriving home from an outing. Dressing in light or bright colors or adding reflective material to clothing will help a loved one be more easily seen.

To avoid slips and falls, make sure boots are non-skid. There are many boot styles on the market that use Velcro instead of laces to allow the person with dementia some success with dressing themselves. Try separate “tracks” that attach to the soles for added traction on icy surfaces. You can also add a sharp tip to canes for that extra grip on winter days. This device is available at home health care stores.

Assume ALL surfaces are slick and by taking smaller steps and slowing down, the person with Alzheimer’s can match gait and speed to a safer level.

• Perception problems can make it difficult for the person with Alzheimer’s to see ice on the sidewalk or realize that ice is slippery or that snow is not a solid surface.
• Keep sidewalks and driveways clear of ice and snow to make walking outside safe for everyone, but do not overuse ice melt products which can reduce traction.
• Use indoor or garage parking whenever possible.
• Especially on stairs or slick spots, insist on handrail use and walk arm in arm when possible.
• Acquire and use a State issued Handicapped placard enabling closer access to the door of buildings.

Medic Alert^® + Alzheimer’s Association Safe Return^® and Comfort Zone^®  offer safety for wandering.Wandering is one of the most frequent and challenging problems that caregivers face. About 67 % of people with dementia will wander and become lost during the course of the disease, and most will do so repeatedly.

Wandering may be triggered when a person with Alzheimer’s disease:

• Tries to search for familiar objects, surroundings or people when they no longer recognize their environment.
• Tries to fulfill former obligations, such as going to work or taking care of a child.
• Reacts to the side effects of medication that cause restlessness and confusion.
• Tries to escape stress caused by noise, crowds or isolation.
• Is not getting enough physical activity.
• Is fearful of unfamiliar sights, sounds or hallucinations.
• Searches for something specific such as food, drink, the bathroom or companionship.

Minimize the risks of wandering by enrolling in Medic Alert® + Alzheimer’s Association Safe Return® and Comfort Zone

Never assume that being at home with someone who has Alzheimer’s makes wandering less of an issue. It only takes a moment for someone to leave the house, and the confusion and disorientation that accompany the disease means a friend or loved one can get hopelessly lost in a matter of minutes. Having some type of tracking device can provide peace of mind that a loved one could be located within a short period of time after becoming separated. Medic Alert + Safe Return and Comfort Zone are two programs that protect people diagnosed with dementia in case of a medical emergency or a wandering incident.

It is not uncommon for a wanderer to require medical attention following an incident. Through the use of a 1-800 number, MedicAlert + Safe Return provides the member’s personal health record including medical conditions, medications and allergies and can be updated 24-hours a day through a private online account or by calling the toll free number during business hours.

When someone enrolled in the program wanders, the MedicAlert + Safe Return hotline activates the resources of law enforcement, medical professionals and the local Alzheimer’s Association chapter staff to assist the member when an incident – either wandering or a medical emergency – occurs.

Comfort Zone^® is a comprehensive web-based location management service. Families can remotely monitor a person with Alzheimer’s by receiving automated alerts throughout the day and night when a person has traveled beyond a preset zone. The alert can be received in any location, even notifying family members or caregivers in another state. This program is particularly useful for those in the early stages who want to maintain as much independence as possible for as long as they are able. Comfort Zone uses a location-based mapping service, or LBS . This term refers to a wide range of services that provide information about a person’s (or object’s) location very similar to a GPS device for turn-by-turn driving directions or tracking packages online. A person with Alzheimer’s wears or carries a locator device (such as a pager or cell phone) or mounts one in his or her car.

To learn more about MedicAlert + Safe Return and Comfort Zone, contact the Alzheimer’s Association Colorado Chapter at 800-272-3900 or go online to alz.org/co. For help caring for someone with Alzheimer’s or for answers to questions about memory loss, call 800-272-3900.

Year End Donations

The holiday season is always a great time to give and exercise the spirit of giving by donating to a qualified charitable organization.

Although tax savings are not usually the primary reason for charitable giving, your gift may qualify for significant tax benefits while providing much needed capital for a charity like the Alzheimer’s Association.

The rate of diagnosis is on the rise and due to the popularity of Colorado as a retirement destination, the demand for our programs and services is expected to increase dramatically in the next few years.

While we work hard to engage the business community in sponsorships for our special events, as is true with most non-profits, our budget is offset by individual giving. As you do your research and make decisions about your end of year giving, we hope you think of the Alzheimer’s Association and the thousands of Coloradoans who need our help.

There are a number of ways you could make that gift to the Association:

Direct Contributions – Gifts enable the Colorado Chapter to continue serving individuals and families in communities throughout Colorado who are living with Alzheimer’s. Designate your gift for general programs and services or to a specific program or to research.

Memorials and Honorariums – A way for family and friends to honor the memory of their loved one or those celebrating special occasions such as a birthday, Mother’s Day, Father’s Day or an anniversary.

Tree of Hope – Each leaf on the mural, on display at the Denver office, is inscribed with the name of an individual, group or event being honored.

Employee Giving Program – Contribute by designating a specific amount to be deducted from your paycheck.

Planned Gifts – Include the Alzheimer’s Association in your estate plan which can be structured to provide tax advantages and a life income while accomplishing a charitable intent.

Shop online – The Alzheimer’s Association receives a percentage of your purchase when you shop at our Web site www.alz.org/co.

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Car Donation – Donate your car through Vehicles for Charity contributions to benefit the Alzheimer’s Association.

Year-end charitable donations keep giving long after your gift is received. Your generous contribution is always appreciated especially in years where financial assets are still struggling to increase in value.

-Robyn Moore, Chief Development Officer

Polar Plunge Participant Judy: Freezing the Day for Alzheimer’s

January 1, 2012:

The day was clear and sunny but a biting wind made my upcoming plunge into the freezing waters that much more daunting. As I inched forward in line my anticipation increased as to what I perceived as my upcoming shock and pain. And then my thoughts shifted to my Grandmother and the shock and pain that she and my family endured as the symptoms of Alzheimer’s disease took root on her body and mind. I thought to myself “nothing can compare to that pain”.

Judy and Mike Halloran at the Polar Plunge

So my anticipation became one of excitement and determination. I do this plunge for my grandmother! I plunge to remember and honor her and to raise funds for the Alzheimer’s Association in her name. A photographer snapped my picture as I ran into the water; my expression was one of surprise but sheer delight! The shock was over before I knew it but the effort I put into fundraising lives on. I started 2012 off with a smile on my face and a new found alertness in my body that I can make a difference in the lives of those living with this chilling disease. It is my hope that those generous donations from my family and friends has helped provide warmth to those living with Alzheimer’s disease and their caretakers. It is also my hope that I am making my Grandmother proud. And so I plunge again, this time without any fear.
See you January 1, 2013!

-Judy

You can register for the 30th Anniversary Polar Plunge at Boulder Reservoir by visiting YPAAC.org/PolarPlunge

Freeze the day with YPAAC at the 2013 Polar Plunge!

Alzheimer’s Association Services Offer A Lifeline to Families

The Alzheimer’s Association offers education programs, support groups, counseling and a 24-hour Helpline for anyone concerned about their own memory loss or changes they are seeing in a friend or loved one. All the services are offered at no cost so our fundraising is critical to our ability to meet an increasing demand. Our weather, opportunities for outdoor recreation and a healthy lifestyle draw young families which in turn draws seniors wanting to be close to children and grandchildren. This increase in our aging population will have a dramatic impact on the number of people in our state reaching the age of highest risk for Alzheimer’s, 65 years of age, where one in eight develop the disease. Today there are 72,000 people in Colorado with Alzheimer’s, by 2050 that number is expected to be 110,000. And, this disease affects the entire family with increased needs for caregiving as the disease progresses.

Classes offered to individuals and families offer insight into the disease and its stages as well as tips and techniques for supporting the person with the disease, caregiving and managing the emotional and physical stress that is often experienced by care partners. Support groups also offer a “lifeline” providing those in the early stages a way to share with others facing the same challenges and frustrations. Care partners are ensured of a safe, comfortable and confidential environment in which to share their grief, their confusion, their anger and even sometimes, laughter with those who understand.

Here’s what some of our attendees had to say:

“I came to this class discouraged and overwhelmed. I leave empowered with volumes of information, sources of support and the courage to continue. Thank you!”

“The Savvy Caregiver Class gets you to put on your seatbelt and get ready for the ride of your life. You learn what’s in store, how to manage, mistakes to avoid and how to laugh! Best 6 weeks of my life–to learn how to better deal with my parents!”

“Everyone at the [support] group knows how it feels to have Alzheimer’s in the family. They understand with knowledge that others don’t have. I love being understood.”

Please consider making a donation to the Alzheimer’s Association in support of our work on Tuesday, December 4, 2012, Colorado Gives Day.

Cheryl Parrish
Vice President of Programs
Alzheimer’s Association of Colorado

Holiday Tips For Caregivers

The holidays offer unique challenges to family care partners as well as the person with Alzheimer’s.

Traditions once shared should be reevaluated and adjustments made if necessary. For instance if Dad always led the tree cutting to the local national forest, maybe this year an adult child could do the cutting after Dad picks out the perfect tree. If your family always attended a worship service together, maybe the local priest or Rabbi would make a visit to your home.

You also may want to consider the size of holiday parties and meals. Gatherings of family and friends can be loud, happy occasions but can increase anxiety and confusion for someone with Alzheimer’s. Consider smaller groups or dedicate a place in the house where a family member can sit quietly with the person with Alzheimer’s if things get overwhelming. Use music as a way to engage the family while including the person who has Alzheimer’s disease. Seasonal music and songs are often remembered long after more recent memories are gone.

Reducing stress for the care partner should be a focus for family and friends as well. Find ways to help by offering to shop, bake, decorate and gift wrap. Offer a respite from caregiving with coupons for a night out, movie tickets or a coffee break with care offered for the person with Alzheimer’s.

Making small changes to your holiday tradition can go a long way toward creating a calmer, more relaxed season for everyone.

Tips for caregivers:
• Have everyone wear festive name badges so the person with memory issues isn’t embarrassed at not remembering the names of family members or old friends
• Use gift bags instead of wrapping paper to involve the person with dementia and save time
• Buy fresh bakery items or ready-to-bake dough instead of spending hours in the kitchen
• Ask neighbors or friends to help with outdoor decorations
• Use Elfster.com or simply draw names for gift giving to reduce the number and cost of gifts
• Plan dinner and parties for earlier in the day before sundowning occurs
• Identify another family member or friend to assist the person with the disease for signs of stress, especially if the primary caregiver is busy cooking or hosting the party
• Find a fun stamp to use for signing holiday cards or scan a signature from a past document and have cards pre printed
• Fill an iPod with favorite tunes and make it available when things get overwhelming or you recognize signs of stress in a loved one with dementia

- Sharon Stokes & Ken Helander, Alzheimer’s Association Early Stage Services Coordinators

National Caregivers Month: Betsy is a Younger Onset Caregiver

John and Betsy attending the Alzheimer’s Public Policy Summit 2011

We were devastated when my loved one (John McClelland) was diagnosed at 55, everything changed. After a couple of years and my position ended, I decided to stay home rather than take another position that required heavy travel. I don’t see myself as a “caregiver” at this time, but I do try to help where I can. It has been an adjustment for me to not work and to deal with the loss of income, but it has been a gift to have time together before the full impact of the disease takes over.

We have traveled the country, visited friends and built new memories. I don’t know how long we will continue to do this, but it has been a special time for us.

I take a lead role in managing our finances; making more of the routine decisions; try to keep projects and plans on track; ensure John has a quiet environment to rest; and has healthy meals. It is hard to watch the days when John is caught in a fog trying to sort out the days activities, it exhausts him. Fortunately we have more good days than bad.

We jointly attend a support group for those in early stage. We have already lost one member and all share in seeing the slow transition of the disease together. The friendships and support we have is very important to us. I also attend a support group for caregivers; our leader is excellent; bringing in support for us on the ongoing grief process, as well as time for us to support one another. In that group, are my heroes who support their loved ones in the later stages of the disease. They are role models of strength, love and commitment. I only hope to be that capable when those demands are called upon to me.

-Betsy Anderson