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.

EMLS in East Austin 2 jpg

Continue reading

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

Austin Mayor’s Task Force on Aging

Dear Friends,

For the past year, I have had the great honor to serve on the Austin Mayor’s Task Force on Aging. I am very proud to have been part of this effort.

The recommendations from the Task Force include the following focus areas:

  1. Healthy Living
  2. Independence
  3. Informed Community

We are especially thrilled that under the focus area of ‘independence’, the Task Force specifically highlights the need for critical support and training for family caregivers. One of their recommendations is to expand CaregiverU, a collaboration that AGE is honored to coordinate with the generous support of the St. David’s Foundation. Continue reading

Dementia and Spirituality Survey

A friend of AGE is conducting a survey dealing with knowledge of and attitudes toward dementia, faith, and spirituality as a part of a masters thesis project.  For those who might be interested, see her invitation below:

INVITATION

I invite you to take a few minutes for an online survey that has nothing to do with the economy or politics or a consumer product!

I am pursuing a Master of Arts in Spiritual Formation from the Seminary of the Southwest (SSW) in Austin, Texas.  I am conducting this survey as part of my senior study of attitudes toward and knowledge of dementia, faith, and spirituality.  The survey is for anyone.  The larger the number and wider the diversity of responses, the more helpful the study will be.

Your willingness to give honest answers to fairly personal questions will be deeply appreciated.  Responses are completely anonymous and not connected to you as an individual.  The general findings and implications will be offered in a workshop in Austin, Texas in the coming months and included in a final paper.

I hope you’re curious enough to take the survey.  And, please invite your friends, family, and associates to participate by giving them the link!   Responses are requested as soon as possible and no later than two weeks from the date of this notification. Just click here to take the survey now.

Many thanks for your consideration!

Barbara Wiederaenders
[For more information or questions, contact me at bwiederaenders@att.net]

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

Tips for Traveling: A Caregiver’s Perspective

[This is the second 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.]

Every work day I eat the very same breakfast—oatmeal, juice, soy milk, and green tea.  Is it because this is a favorite meal choice?  No, it’s because I’m not a morning person, so fixing the same breakfast every morning saves me from thinking.  I do it on auto pilot.  Similarly, an individual with a cognitive disability thrives on using auto pilot.  For them, the brain pathways don’t work as well as they formerly did, so thinking requires more effort.  Staying in a routine and doing things the same way every day requires less thinking.   Traveling shakes up the old routine, and takes away the familiarity, requiring more thinking effort, which increases the stress and anxiety that further impedes the thinking process.  Knowing all this, and experiencing all this, may make a caregiver decide to forgo travel—but not this traveler!  I choose to continue traveling with my dear husband because we have three adult children living in other cities, and spending time with them is very important.  To make travel easier on both of us, I’ve adopted new strategies and continue searching for more good ideas from other caregivers. 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.

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.

How many of us get enough sleep?

Did you know that during sleep our brains consolidate and store our memory and learning? Sleep also helps us function more efficiently and effectively. Sleep helps us stay healthy and prevent additional health problems.

An adult needs 7 to 9 hours of sleep per night. How often do you meet that?

Sometimes we deprive ourselves of sleep by the lifestyle we have (or choose to have). Work, poor sleep habits, and other factors contribute to volitional sleep deprivation. This shows that many of us don’t take sleep as seriously as we should. But other things beyond your control also affect how we sleep: environmental disruptions and untreated sleep disorders fall into this category.

Being tired can interfere with your daily activities, such as being sleepy at work- which can causes errors or injuries. It also affects your driving. We may not like to admit it, but how many people have felt drowsy while driving? Or even more dangerous, dozed off while at the wheel? It’s more common than you may think.

Sleep Apnea is one serious sleep disorder, and it is when airflow stops during sleep. This causes frequent awakenings so the person can adjust and open their airway. In severe Apnea, some people stop breathing over 30 times each hour during their sleep. That does not sound very restful! If you think you might have an issue similar to this, you should contact your doctor, or look up the Central Texas Neurology Consultants of St. David’s Round Rock Medical Center, who provided this information.

Those with Alzheimer’s disease (or those who care for them) know that as the disease progresses, sleep patterns often change. They might experience confusion between night and day, causing them to sleep long periods at off hours. Often, it can causes restlessness or sleeplessness, which can lead to wandering. And, of course, for caregivers all of this can prevent or interfere from being able to get any real rest of their own.

There are a couple of things that caregivers can do to alleviate sleep issues:

  • Check with your physician about medications that might be causing sleeplessness.
  • Avoid caffeine or stimulants.
  • Encourage your loved one to be active during the day, even exercise, but be wary of too much activity close to bed time.
  • If they struggle sleeping at night, minimize daytime naps especially later in the day.
  • And try exposing them to sunlight in the morning and earlier in the day.
  • And of course, maintain consistency when possible in rising for the day and going to bed at night.

Moral of the story: take care of yourself, get enough sleep. The consequences can echo through every aspect of your life. And if you think you or your loved one need medical help with getting real, restful sleep, don’t hesitate to contact your doctor. And if there are other things in your life (such as issues with aging or getting older, or caregiver challenges) that are interfering with your ability to rest and take care of yourself, please contact AGE of Central Texas and let us figure out how to help you find what you need.

Living with Alzheimer’s Disease

YNN Austin recently highlighted Alzheimer’s Disease in their Healthy Living segment. Check out the video to learn more about recent research. -SP

Alzheimer’s is a degenerative disease where nerves in the brain die. Recent studies have identified new genes that may contribute to the late onset Alzheimer’s disease.

Some new developments have come out in Alzheimer’s research. Find out more in this edition of “Healthy Living.” Watch the video to check it out.