Helping Caregivers Through the Holidays

When someone in your family has dementia, or really any other chronic condition, it can affect what holiday time and family gatherings look like. There’s no magic solution, but we hope these tips and reminders might help make this holiday season a bit easier and merry as you balance the holidays as a caregiver.

1. Help your family and friends adjust their expectations
If some time has passed since visiting relatives or friends have seen the person who has dementia, there may have been significant changes in that person’s status since the last time friends or family last saw them. It is often very helpful if you update family, perhaps via a mass email or individual phone calls, on what kind of cognitive changes are going on and what they can expect when they arrive.

These changes can be hard for family members to accept. Remind them that changes in memory and behavior are a result of the disease, not the person. Continue reading

Older Americans Month 2013: Unleashing the power of age!

Here are a few of the things we know about the older adult population:

  • The older population (65+) numbered 41.4 million in 2011, an increase of 6.3 million or 18% since 2000.
  • Over one in every eight, or 13.3%, of the population is an older American.
  • Almost 3.6 million elderly persons (8.7%) were below the poverty level in 2011.
  • The Round Rock-Austin metropolitan area had the fastest growing “pre-senior” (age 55-64) population in the country, with a 110% change.
  • Older Americans MonthGrowth of the senior (age 65+) population ranked second nationally over the same period.

In the news, most of what you hear about aging is reflects negative or worried attitudes like how the ‘silver tsunami’ is coming and how the community isn’t ready to adequately deal with the booming population of older adults. At AGE of Central Texas, our business is to face the negativity head on to meet the needs of seniors in our community and help older adults age with dignity and vitality.

Thankfully, the time is upon us to focus on the positivity of aging– May is Older Americans Month! Every year since 1963, May has been the month to appreciate and celebrate the vitality and aspirations of older adults and their contributions and achievements. It is a proud tradition that shows our nation’s commitment to honor the value that elders continue to contribute to our communities. Continue reading

Making the Most of the Holidays: Helpful Tips for Caregivers

[This is the third installment of posts from Faith, AGE’s CaregiverU Coordinator and expert on being a family caregiver – you’ll continue hearing from her on a range of topics about once a month.]

We all carry visions of what the holidays should look like and often those visions don’t jibe very well with reality! At this time of year, many of us visualize a Norman Rockwell type scene with everybody gathered happily around a perfectly laid holiday table. Reality is often a bit different!  In addition to that image, I also carry around in my head visions of previous holidays when life was different.   That is, when the kids were younger and my spouse was cognitively able to partner with me in all the holiday preparation.  Today my husband has a cognitive disability and the children are young adults with spouses and responsibilities of their own.  Part of the holiday experience is traveling to their homes for visits and hosting them in our home, all the while helping my spouse cope and have a good time.  As a caregiver, managing the holidays has come to mean managing many different issues—disruptions in schedule and routine, traveling, adapting to new surroundings, decorating the home, shopping for gifts, and preparing food, to name a few. Continue reading

How does Alzheimer’s affect the youngest among us?

My name is Emily, and I am the Development Associate and resident blogger at AGE. And I am a grandchild of Alzheimer’s Disease.

Or rather, I am a grandchild of a woman with dementia, likely caused by Alzheimer’s. It started when I was just 10 years old, and it has been over 15 years since my grandma started disappearing. It is no easier now than it was as a child.

First, she stopped cooking. It was how she showed her love and doted on us. I knew something was really wrong when my Grandpa, who had never really cooked, took over what had once been Grandma’s domain.

Then the more bizarre behaviors began- things that really mortified the kid I was at the time. Grandma would take out her dentures at the most inappropriate places to clean them, or she’d ask for ketchup at a Mexican restaurant because she couldn’t differentiate that from salsa, or she started to lose her ability to know when she should whisper in church or the movie theater instead of loudly observe things that you don’t say aloud in public.

And, of course, in crept the tell-tale sign of asking the same exact questions over and over and over again.

Grandma had an ‘angry’ period where she was occasionally physically and verbally violent, mostly towards my Grandpa. Then after a while, she became more and more juvenile- in the most joyful way. She became so affectionate, always reaching for a hand to hold.  And then, she became too affectionate, even with strangers. She has been known to sneak a kiss when a friend would try to just give her a hug, and since she’s in a wheelchair it’s quite easy for her hands to wrap around and give someone a little squeeze on the behind- it’s even happened to our pastor.

Mood swings and personality changes are common for those with dementia, but that was difficult to understand as child and even as a teenager. I sometimes felt annoyed at her behavior, angry at her outbursts, indifferent, confused, sometimes amused, and so very often deeply sad. Most of all, I felt beyond guilty for feeling anything but pure love and gratefulness for this woman.

As for the rest of the family, there have been stages of grief, denial, and bargaining for my parents and my aunt as they transitioned from being this woman’s children to being her caregivers. It has been an incredible journey of highs and lows, questions and transformations that have all fundamentally altered what my family looks like. Dementia changed my Grandmother, but it also changed us.

The irony is that she’s almost as fit physically now as she was five years ago. There’s no indication that she’s giving up yet, even if her mind has. The grandma I once knew has been almost completely devastated by whatever has taken residence in her brain. It has been a long progression. She hasn’t been able to walk for a few years now. She doesn’t really recognize any of us anymore. I don’t think I’ve heard a purposeful sentence from her in over a year. And these things can be hard for a child to witness and accept. “She looks fine, why won’t she talk to me? Why doesn’t she know you, Mom? How can she forget that she’s married?

I know my experience is not special or unique:  1 in 8 older Americans have Alzheimer’s disease. And there are over 15 million Americans providing unpaid care for a person with Alzheimer’s or other form of dementia (Alzheimer’s Association). That is a massive amount of individuals, spouses, children, and grandchildren being dragged through the mud of this disease. You are not alone. We can learn from our shared experiences. It’s important to tell your story. And it’s important  to include the children of your family in discussions about what’s going on with your loved one with dementia.

For those of you who have a child facing the immediate reality of dementia in either a parent or grandparent, there are some lots of resources out there to help you talk about dementia or Alzheimer’s. This disease is a bit different from others in that Grandma, or your uncle, or your Mom may look perfectly healthy on the outside. Kids need some help understanding the mechanics of this disease and that you can’t always see that something is wrong when someone is sick in this way. The two resources listed below have great information ranging from how to make the conversation developmentally appropriate to concrete tips and talking points:

Ultimately, I do not want to detract from unbelievably heartbreaking experience of those, like my Grandma, who are dealing with dementia themselves. Because it isn’t really about the pain of the rest of the family at all, it’s about allowing your loved one to experience the rest of their life with as much dignity and vitality as possible. Helping the children in your life understand what Alzheimer’s is doing to their loved one will make it easier for them to continue to see the person instead of the disease.

Reflecting back on the beginning years, Grandma never once talked about being aware of her diagnosis or what it was like for her. She sort of just slipped from the beginning stage where she was just ‘mildly’ forgetful to a place where she could no longer contemplate a question about her state of mind if she tried. I wish I knew what it was like for her. This journey has shown me that there many things I don’t know, and that there’s no ‘right’ way to be a supporter for someone with dementia. What I do know, Grandma, is that I will continue to love you wherever else this road takes us.

For those in the greater Austin area, AGE of Central Texas has a number of resources for caregivers and for those experiencing dementia. Click here to visit our website for more information.

Help Teens Impacted by Alzheimer’s Disease!

The teens division of the Alzheimer’s Foundation of America (AFA) is currently competing for a $25,000 award from the Pepsi Refresh Contest that will help teens impacted by Alzheimer’s disease get connected, educated and involved.

AFA Teens would use the award to add interactive, educational tools to its Web site (www.afateens.org)

and help teens build support systems in their communities by distributing funds to AFA Teens chapters nationwide. The online tools will explain disease progression, offer coping strategies, and encourage teens to adopt healthy lifestyles that may lower risk factors for chronic diseases as they age.
Award winners are determined by the number of votes received from the public during a specific month that the proposal is posted. AFA Teens is competing through May 31.

“We encourage you to vote each day throughout May and spread the word so we can assist teens across America.

Together, we can change the face of care,” said Eric J. Hall, AFA’s president and CEO.

Visit the AFA website for more information.

NEWS: Grandparents who care for children ‘boost obesity risk’

From the BBC.

Young children who are regularly looked after by their grandparents have an increased risk of being overweight, an extensive British study has suggested.

Analysis of 12,000 three-year olds suggested the risk was 34% higher if grandparents cared for them full time.

Children who went to nursery or had a childminder had no increased risk of weight problems, the International Journal of Obesity reported.

Nearly a quarter of preschool children in the UK are overweight or obese.

The researchers said very little research had been done on the influence of childcare on weight.

First (Multigenerational) Family

President-elect Barack Obama and mother-in-law Marian Robinson
President-elect Barack Obama and mother-in-law Marian Robinson

The recent confirmation that Marian Robinson, mother-in-law to President-Elect Barack Obama, will join the First Family in the White House spotlights the multigenerational family in America. According to Generations United- a national organization focused solely on improving the lives of children, youth, and older people through intergenerational strategies, programs, and public policies– there were 3.9 million multigenerational family households in the United States, representing approximately 4% of all households. In 65% of these households, the grandparent is the householder and lives with their children and their grandchildren.

Though millions of American families include members across generations, this living arrangement has declined over the decades. Amy Goyer, VP of Grandparents.com, recalls “until America became a mobile society, it was quite common for grandparents to live with family members as they got older. My great-grandfather lived with my grandparents when my mom was young, because he was a widower and wasn’t interested in living alone.”

Now, many multigenerational families are formed when older loved ones combine with their children or other relatives  for financial reasons. However, the First Family is proving that integrating the older generation with the younger also can benefit adult children and grandchildren: parents enjoy assistance in childcare and domestic duties while grandchildren are privileged with their grandparents’ attention and wisdom.  Finally, for the senior, being closer to family allows them to reduce senior isolation, and proximity to more resources and caregivers.

President-elect Obama may be looking forward to a difficult first term, but, without a doubt, Marian Robinson’s presence in the White House  and care for the Obama family will, without a doubt,  at least let him worry about one less thing.

ABC News: Defining the Grandma Effect

AARP: Grandma’s in the House

Multigenerational Families