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.

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