Why I Walk to End Alzheimer’s – Adam’s Story

My mom, Nancy Leonard.
My mom, Nancy Leonard.

 

My mom, Nancy Leonard, died from Alzheimer’s disease on Valentine’s Day 2013. Her mother, Betty Stoffregen, is in a nursing home in Lubbock, Texas still struggling with this horrible disease. I am devoting my team’s cause to remember my mom and for the struggle that my grandmother goes through still today.

 

My mom was a school teacher in a small town in Eastern Colorado (Bethune School). She was such a wonderful person that always thought about others first and was truly dedicated to teaching her students. After her retirement in 2008 she moved to Dodge City, Kansas to take care of my grandmother with dementia. They then moved to Lubbock,Texas to be closer to family. To make a long story short, my mom, while taking care of her mother with dementia, began showing signs of Alzheimer’s disease.

She eventually moved in with me and my roommates in Denver in 2010. I was 28 years old. We did our best to take care of her through all of the ups and downs – through her going out for walks and getting lost and having the police bring her home – through her having hallucinations – through her ending up in a nursing home. We got to a point where we needed outside help. We hired a company to have a nurse come over every day while we were at work to take care of her. We eventually needed to move her to Brookshire House in late 2011. The staff and the facility were such a joy and wonder to work with they actually helped my mom get to the point where she could talk again. I was able to talk to her every day on the phone. However, the disease eventually progressed and she was moved into a secure section of the nursing home. She started to fall regularly, then she stopped eating, and the end result we all know…

My mom was 60 years old when she died. She had so much life to give. My mom was such an influential person in my life and having to go through this at such a young age on both our parts was a life changing event. I think that the Alzheimer’s Association is such a wonderful organization because people need to understand how this is going to affect their lives. This disease doesn’t care how old you are, it doesn’t care how it hurts the ones you love, it is relentless, it is ruthless, it is cruel. The only thing that you can do is be prepared and know what to expect. You have to be financially ready and of sound mind to even begin to handle something of this magnitude.

I miss my mom daily and only hope that we can come together as a human race so that nobody has to go through this again. That’s why I will be participating in this year’s Walk to End Alzheimer’s at Denver City Park on September 20, 2014.

 

National Alzheimer’s Disease Awareness Month

This month is National Caregiver Month and National Alzheimer’s Disease Awareness Month. It can also be a hard time of year for those living with Alzheimer’s.

Bill with the whole family at Christmas in 2006
Bill with the whole family at Christmas in 2006

My own family was impacted 12 years ago as my husband Bill began to develop symptoms of the disease at only 52 years of age. Thanks to my healthy active parents, two wonderful sisters and a strong community network, we were able to care for Bill at home for most of the years he lived with the disease. The holidays were the most stressful for me however. We tried to keep our traditions alive for the first few years, going to the Nutcracker Ballet, cutting our tree from nearby forest land, walking in the annual Golden Holiday Parade. However, as the disease progressed Bill got more anxious about many of those cherished traditions. He worried about buying and wrapping gifts for me and other family members. Party invitations had to be carefully considered if there would be a lot of people because he was easily confused as well as embarrassed at not remembering names. He got frustrated at not being able to make the delicious meals he had enjoyed creating each year during the holidays. I found the tasks specially associated with the holidays as well as many others household chores falling to me alone. With advice from the Alzheimer’s Association, I finally took a hard look at what we were continuing to do each year that was causing me added stress and contributing to a general sense of exhaustion. Once we stopped to think about all the things we were doing, we refocused on what we truly loved the most and looked how to make those things just a little easier for both of us. By changing things a bit we could still manage to keep the joy in the holidays. Cutting the tree on forest land was still manageable if I was the one who used the saw, homemade items could be supplemented with store-bought goodies, friends could take Bill shopping for gifts and help him manage the money, and we could spend time celebrating with smaller groups of people that we really cared about.

This time of year will always be bittersweet for me having lost Bill to Alzheimer’s four years ago this coming February but his legacy lives on every time I share our story and offer insight about caregiving.

This month, take some time and look around your own life. Find the caregivers who need your love and support this holiday season. Sometimes it’s hard to ask for help. If you can be specific and suggest some ides of your own, you may find your offer is received and with a great deal of appreciation and relief. Offer to do errands like grocery shopping or picking up medications at the pharmacy. Drop by with a ready-to-cook meal. Give the gift of your time to sit with the person who is ill or needing a companion so the caregiver can take some time off. Offer to wrap gifts or do the decorating. Caregivers are often too busy to think about themselves and what they need in order to keep going. Let them know they aren’t alone. If you know someone who needs help caring for a loved one who has Alzheimer’s or another form of dementia make sure they know about the Alzheimer’s Association. All of the services for individuals and families are free and just a phone call away. 800.272.3900 Many caregivers will tell you there was never any question about whether they would care for someone they love. Each and every day is a gift, every moment, even when things get tough, a treasured memory. Find a way to honor a caregiver in your life this holiday.

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.

The Longest Day
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.

The Longest Day at Vail
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

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.
Thanksgiving Dinner with Family
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, Alzheimer’s Association Early Stage Services Coordinator

National Caregivers Month: Betsy is a Younger Onset Caregiver

John and Betsy
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