Caring for Ailing Parents

Parents care for children, and then children grow up to become parents and care for their own children.  That’s the natural order of things—except when it isn’t.

Sometimes parents cannot care well for themselves, and need others to help. This is when children, purely out of love and concern, often begin to care for a parent.  Sometimes the caregiving journey is short-lived, because the need for care is temporary—such as when a parent has surgery or goes through treatment to regain health.  Sometimes it’s a long journey because the parent has a chronic illness such as dementia, or the after-effects of a stroke. When a child cares for an ailing parent, how is the parent/child relationship affected, and what can the child do to make the journey easier?

8 Unselfish Ways to Put Yourself First

Our CaregiverU Program Director, Faith Unger, has a great mantra: “Caregiving is a marathon, not a sprint.”  All too often, caregivers are thrust into the role of taking care of a family member, with little warning and no training.

According to the American Psychological Association, it is estimated that informal caregivers – typically spouses or adult children – provide 80 percent of the long-term care in the case of diseases such as Alzheimer’s.  Their 2003 study found that caregivers had a 23 percent higher level of stress hormones and a 15 percent lower level of antibody responses than non-caregivers.

Caregiving also takes a psychological toll. According to the National Family Caregivers Association, the roughly one out of four caregivers who care for a family member for at least 36 hours a week – basically making it a full-time job – are more likely to show signs of depression or anxiety.  Relative to peers who don’t provide on-going care, spouses can be depressed or anxious six times more often; adult children suffer these problems twice as often.

May Is Older Americans Month

May Is Older Americans Month

The month of May represents national “Older Americans Month,” when communities across the country recognize older Americans for their contributions and demonstrate the nation’s commitment to helping them stay healthy and active.

This year, in honor of the 50th anniversary of the Older Americans Act, communities are focusing on how older adults are taking charge of their health, engaging in their communities, and making a positive impact in the lives of others.  President Lyndon B. Johnson signed the Older Americans Act into law in July 1965. Since that time, the Act has provided a nationwide aging services network and funding that helps older adults live with dignity in the communities of their choice for as long as possible.

While AGE of Central Texas provides programs, education, and resources to older adults and their caregivers year-round, Older Americans Month offers an opportunity to emphasize how senior adults can access the home- and community-based services they need to live independently.  We are honored to be a part of the live of the older adults and family caregivers of this community, and to join them on their journey.

Thumbing Your Way to Health

What is better than learning how to use a smartphone for the first time?

How about learning to make your mind and body healthier with your device? How about taking a class from your peers? Then catching up with them over a cup of coffee after class?

The marriage between health and technology is becoming stronger every day. With the upcoming reign of wearable tech, the relationship between our digital devices and our bodies will grow. The AGE Computer Lab is here to help our community navigate it. 

Does a license make a difference?

How does someone go about deciding if an Adult Day Care center (ADC) is a good fit for a loved one? There are many factors, but one important consideration is the question of licensing.

We understand that it’s not easy to entrust a loved one’s well-being to strangers. That is why licensing is important to AGE of Central Texas– we want to do everything we can to reassure family caregivers that our Adult Day Health Centers are safe and held to the highest standards.

In Texas, the Department of Aging and Disability Services (DADS) licenses and surveys adult day care facilities to ensure compliance with state and federal laws and regulations to protect individuals who are receiving these long-term care services.

Some of the requirements that licensed adult day care centers follow include:

Improv and Memory Loss

On a recent Tuesday, several adults diagnosed with memory loss gathered in a church in East Austin wearing pink wigs, cowboy hats, Hawaiian leis, and ski caps. One woman, who is really from France, told the others she was from Seattle and sung in a punk band. Another man recounted his recent journey sailing across the Atlantic. A woman from Mexico shared hunting tips. They hadn’t forgotten where and who they were. Rather, these men and women were the first group in Austin to ever try improv comedy as therapy for memory loss.

Last month, AGE expanded its Early Memory Loss Support program to a third site at Hope Lutheran Church in East Austin. In a new location with new participants, AGE brought in a new activity with the improv experts at Move Your Tale. The group was diverse—seven older adults with early-stage memory loss, program coordinator Delilah Dominguez, and a handful of eager volunteers, including the church’s pastor and deaconess.

Spring Lawn Care: Or When His (Or Her) Jobs Become Your Jobs

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

Lawn care.  Hmmm, not my expertise.  I do enjoy the sight of a well tended lawn, though.  Thick green grass, nicely edged, pretty stones in a ring around each tree, neatly trimmed trees, front flower bed blooming.  All very nice, but I am clueless as to how to create that, and probably not much better on knowing how to maintain it.  You see, I’ve been married close to 45 years and we’ve had a system called ‘his work’ and ‘her work’.  I took care of the inside of the house and he took care of the outside.  The work inside of the house and all my other responsibilities took up all of my time and then some, so I paid little attention to the work in our yard.  Seven years ago when we moved into our current house, I was eager to learn how to do yard work and hoped to work together with my spouse to plan the landscaping and share in the labor.  My dear husband was insulted by those plans—refer back to ‘his work’ and ‘her work’ above.  The yard was definitely his domain and I’d best remember that.  In the name of peace and harmony, I took my rightful place, and simply enjoyed the loveliness.

I enjoyed it until now.  Now my spouse is not so capable of planning and organizing the yard work.  He sometimes forgets how to start the lawn mower and claims it doesn’t work.   Our good neighbor comes over to get it going, and tells him the mower just needed an adjustment.  Helpful friends give him bedding plants for the flower beds, thinking he would enjoy digging in the dirt again.  He enjoys the digging and puttering, but then becomes very anxious because the plants aren’t thriving.  That’s when he asks me what to do, and, I’m –clueless.   He worries about the bald spots in the front lawn and then I worry.  Surely bald spots are not a good thing, but what does one do?

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:

• From the Fisher Center for Alzheimer’s Research Foundation: “Talking to Children About Alzheimer’s“
• From Tam Cummings, experienced gerontologist: “The Do’s and Don’ts of Talking To Kids About Dementia”

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.

What’s the Difference: A Look at Dementia and Alzheimer’s

Dementia: The presence of multiple cognitive deficits by both memory impairment and one or more of the following:

• Executive functioning (planning, organization, sequencing, abstraction)
• Aphasia, Apraxia, Agnosia
• No delirium
• Interferes with social or occupational functioning

Alzheimer’s Disease: A slowly progressing brain disease, which is the most common form of dementia. It affects recent memories first, then begins to affect emotions, decision making, personality, eventually destroying long-term memory and ability to interact with the world. In the moderate stages you might notice mood and communication changes, delirium, and wandering.

It is not easy to distinguish between dementia (and its other causes) and Alzheimer’s.   They are often confused because they share a similar set of symptoms, but Alzheimer’s is just one of many possible causes of dementia.

Some causes of dementia may sometimes be treatable, so it is important to talk with your doctor to try and figure out exactly what is going on. A diagnosis of dementia does not necessarily mean the person has Alzheimer’s. Unfortunately, Alzheimer’s cannot technically be diagnosed while someone is alive, because the only definite way to identify Alzheimer’s is to examine brain tissue upon a person’s death. It can be very challenging to deal with not being able to find an absolutely definitive diagnosis.

Information care of Kim Butrum, RN, Gerontological Nurse Practitioner from The Memory Center at the Seton Brain and Spine Institute. 

Below is a video from aboutalz.org which explains the process that occurs within the brain with Alzheimer’s:

AGE serves an average of 40 older adults every day who need daytime supervision and assistance due to a memory impairment. AGE’s Adult Day Centers provide a community where older adults can engage with their peers in therapeutic and stimulating activities under the supervision of a full-time nurse and trained staff. This program helps these vulnerable older adults avoid early nursing home placement and instead keeps them at home with their families. This gives family caregivers the respite they need to continue to work and balance taking care of their families and themselves.

If you would like to join the AGE of Central Texas family by giving towards the direct services that benefit clients and family caregivers who are dealing with dementia and Alzheimer’s, please click here or send a check to AGE at 3710 Cedar St # 2 Austin, TX 78705. Feel free to reach us at www.ageofaustin.org or 512.451.4611.

 We are ever grateful for those who support us in deed and word in our mission to serve older adults and those who care for them. With your support, we hope to continue to meet the needs of this community.

Not so super: NFL players lose cognitive function in their senior years

This Sunday, Superbowl XLV will feature the Packers v the Stealers in our favorite American tradition. While I may personally be more excited about the special episode of Glee that will follow the game, I know I will keep an eye out for any major head injuries by both team’s players. Why? Because these star athletes have an exponentially increased risk of developing cognitive problems as they age, as a result of multiple head injuries during their career. Sadly, the bright young stars of today’s football may be just as legendary as former greats like Earl Campbell, Ted Johnson, or Ralph Wenzel. Also like them, they may face the same health related problems that they do. -SP

Ralph Wenzel was a lineman for the Pittsburgh Steelers from 1966 to 1970 and for the San Diego Chargers in 1972 and 1973. Like many other former NFL players, today he suffers from Alzheimer's-type dementia, forcing him to live in an assisted living facility. His neurologist attributes his condition to the concussions and other brain trauma he experienced as a player. Photo and text from http://www.ralphwenzeltrust.org

NFL’s dirty little secret: Players suffer
By Jeff Pearlman, SI.com.

(CNN) — The business leaders of the National Football League used to have a secret.

It was a deep, dark secret, one they kept written on a microscopic piece of gold-plated paper, locked behind a door, behind a vault, behind a 20-foot-long man-eating anaconda in the basement of its New York offices.

The majority of the world’s secrets are easily uncovered. This one, however, stood as a modern-day equivalent of the inner workings of the Bavarian Illuminati. Nobody was ever supposed to suspect. It was passed down from generation to generation; only the most trusted and knowledgeable of NFL officials were ever genuinely aware of the truth.

Now, however, in Year of Our Lord 2011, the secret has somehow escaped professional football’s clutches, only to land in the midst of mainstream society.

The world is doomed! The empire is conquered!

Playing football is (gasp!) bad for you.

Yes, it is true. Playing football is bad for you. Bad for the neck and shoulders, bad for the arms and legs, really bad for the brain. See how NFL players look like muscular human-stallion hybrids, what with their fire hydrant forearms and refrigerator-sized calves and 4.3-40 times? Check back in a decade, when a shockingly large number will have trouble limping from the couch to the refrigerator without stumbling to the ground in agony. In the worst cases, some will struggle to remember their own names.

The stories of past NFL players-turned-walking (or not walking) wounded are heartbreaking and endless. The great Earl Campbell can barely stand up. Neither can the great Wilber Marshall. Or the great Dave Pear. Or the great Wally Chambers. John Mackey, the legendary Colts tight end, suffers from frontotemporal dementia and lives in full-time assisted living. Ralph Wenzel, an NFL guard from 1966-73, also suffers from dementia and can no longer dress, bathe or feed himself. Ted Johnson, a former Patriots linebacker and only 38 years old, shows early signs of Alzheimer’s disease.

Yet even though we are all now relatively well-versed in the risks that come with America’s most cherished sport, the NFL — the ultimate corporate monolith — doesn’t want you to think about it. Or worry about it. Or, ahem, be aware of it. Just kick back and drink your Budweiser.

As reported in The New York Times, the league recently demanded that Toyota significantly alter a 30-second advertisement that cites the danger of football (Pathetically, Toyota gave in). The spot, which most sports fans have seen by now, focuses on the automobile company having contributed crash research to those scientists looking into football concussions. In the ad, a mother worries “about my son playing football.”

Brian McCarthy, an NFL talking head, told the Times that “we felt it was unfair to single out a particular sport. Concussions aren’t just a football issue.”

Read more at CNN.com.