Caring for Ailing Parents

portrait of asian father and son.

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?

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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

The “Sandwich Generation” should be called the “Hero Generation”

(Guest Post by Caregiving Cafe)

According to Pew Research’s report titled “The Sandwich Generation,” 47% of US adults in their 40’s and 50’s have a parent who is 65 or older and are caring for a child 18 or younger, or are supporting a grown child.  Many are providing caregiving as well as financial and emotional support.  [Pew Research, January 2013]

With advancing age, the likelihood of an aging parent needing help by the time a child becomes a young adult is rather great.  The picture becomes a bit more complex as grown children experiencing hardship (financial or emotional) pull at their parents’ heartstrings (and wallet).

I have had a taste of this dubious “sandwich” while caring long-distance for my mother and raising our daughter.  Mine was actually loaded with the “extras,” as I also began to care for my husband when our daughter had just turned 13.  He became disabled as a result of CRPS, a painful and debilitating neurological disease. 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.

Early Memory Loss Clients Become Published Authors

On Thursday, June 21, fifteen older adults diagnosed with memory loss performed their published poems and stories for family and friends through the partnership of two local non-profits, Badgerdog Literary Publishing and AGE of Central Texas.

New Connections, a program of AGE of Central Texas, is an early intervention program for people with memory loss, dementia, and Alzheimer’s disease. This pioneering program offers evidence-based activities for participants, such as brain exercises, music therapy, a current events discussion group, writing workshops, and a support group led by a mental health care professional.

Badgerdog Literary Publishing, an Austin-based literary arts nonprofit, helps build robust, vital literary communities through the transformative powers of reading and writing. Badgerdog has successfully partnered with AGE on several occasions over the last two years to deliver its Silver Voices in Ink (SVI) creative writing workshops and provide quality arts programming that helps seniors stay intellectually, emotionally, and socially engaged. SVI pairs older adults with professional writers to help them develop artistic skills and share their stories with the community. Participants take part in writing workshops led by professional writers, which culminate in the annual publication, Transcend: Silver Voices in Ink, and include public readings such this past event.

Every 68 seconds, someone in the United States develops Alzheimer’s disease, according to the Alzheimer’s Association. That number is expected to increase to one every 33 seconds by 2050, resulting in 16 million Americans with dementia. In Texas alone, more than 340,000 people had Alzheimer’s in 2010, a 26 percent increase since 2000. As the disease progresses, a person’s ability to recall both short- and long-term memories is affected, along with speech and communication. Writing (either on their own or with assistance) helps restore a sense of identity, control, and personhood that those with Alzheimer’s too often lose.

Dagmar Grieder, whose husband is a participant in New Connections, says it has helped both of them. “The program gives him stimulation and sensitive support in a variety of areas and helps him to have an ongoing, intellectually rewarding life.”

The following is  writing sample from one of the participants:

AGE of Central Texas and the New Connections program are funded by the St. David’s Foundation.

For Glen Campbell and others with Alzheimer’s, musical memory is often the last to go

Music therapy is one of the many tools we use at Elderhaven Adult Day Health Centers, for this exact reason!

 

For Glen Campbell and others with Alzheimer’s, musical memory is often the last to go

It was about eight years ago, when Ashley Campbell was in high school, that she first noticed the memory problems of her famous father.

She was watching “Lord of the Rings” at home with friends when Glen Campbell walked in. “What are you watching?” he asked. “Lord of the Rings, dad,” she answered. A couple of minutes later, he came back in the room and asked the same question. Then, he did it a third time.

As she entered college, she noticed her dad’s memory was getting worse. “He started getting very dependent on my mom for everyday things, asking her questions about things he should know. He’d be in the house and say, ’Where’s the bathroom? Where’s my closet?’ ”

Knowing that Mr. Campbell’s dementia has been advancing for so long, it is remarkable that he is still able to perform music night after night as part of his current “Goodbye Tour,” from old favorites such as “Wichita Lineman” and “Rhinestone Cowboy” to newer pieces such as “Ghost on the Canvas” and “Nothing But the Whole Wide World.”

Mr. Campbell, 75, announced his diagnosis of Alzheimer’s disease last year and then began the tour that will come to Pittsburgh tonight at the Byham Theater, Downtown. Ashley Campbell has a close-up view because she and her two brothers make up Mr. Campbell’s backup band and can watch him both on- and offstage.

“It’s been wonderful to spend so much time with my dad,” she said in an interview last week. “It’s been such a blessing to me, because he was out on the road a lot when I was growing up. But since he is losing his memories, there is also something very emotional about that.”

She has been able to see firsthand how much stronger his memory for songs is than many of his other recollections, and it makes sense to her.

Read more:http://www.timesleader.com/stories/For-Glen-Campbell-and-others-with-Alzheimers-musical-memory-is-often-the-last-to-go,153189#ixzz1vSfipOql
Read more:http://www.timesleader.com/stories/For-Glen-Campbell-and-others-with-Alzheimers-musical-memory-is-often-the-last-to-go,153189#ixzz1vSfKPP00

Dementia’s youngest victims often defy stereotypes

LEESBURG, Florida (AP) — The aging of the massive post-World War II baby boom generation in the U.S. is casting light on early onset dementia, a sorrowful subset of younger people experiencing a slow, cruel overtaking of their minds.

About 200,000 Americans under 65 are among the 5.4 million Americans suffering from Alzheimer’s disease, according to the Alzheimer’s Association. Experts’ estimates suggest there’s a similar number of younger people with other types of dementia, meaning about a half-million Americans, some as young as their 30s, suffer from early-onset or younger-onset dementia.

The number of people suffering from all types of dementia is rapidly increasing because of the aging of the baby boom generation — the 78 million Americans born between 1946 and 1964 — though there’s no sign the percentage of younger people with dementia is going up.

Doreen Watson-Beard is one of the tiny minority. And she has seen the disease from two sides

The nurse cared for more people with dementia than she could count. She was so moved by her patients that she led Alzheimer’s support groups. She knew the warning signs and understood there was no cure.

But the 49-year-old never thought the disease would affect someone her age.

 

Read more at USA Today.com 

NYT: Life, With Dementia

This is a powerful piece on the lives of convicted felons living in the California prison system with dementia. The whole story and accompanying video is a must see. 

SAN LUIS OBISPO, Calif. — Secel Montgomery Sr. stabbed a woman in the stomach, chest and throat so fiercely that he lost count of the wounds he inflicted. In the nearly 25 years he has been serving a life sentence, he has gotten into fights, threatened a prison official and been caught with marijuana.

Despite that, he has recently been entrusted with an extraordinary responsibility. He and other convicted killers at the California Men’s Colonyhelp care for prisoners withAlzheimer’s disease and other types ofdementia, assisting ailing inmates with the most intimate tasks: showering, shaving, applying deodorant, even changing adult diapers.

Their growing roster of patients includes Joaquin Cruz, a convicted killer who is now so addled that he thinks he sees his brother in the water of a toilet, and Walter Gregory, whose short-term memory is ebbing even as he vividly recalls his crime: stabbing and mutilating his girlfriend with a switchblade.

“I cut her eyes out, too,” Mr. Gregory declared recently.

Dementia in prison is an underreported but fast-growing phenomenon, one that many prisons are desperately unprepared to handle. It is an unforeseen consequence of get-tough-on-crime policies — long sentences that have created a large population of aging prisoners. About 10 percent of the 1.6 million inmates in America’s prisons are serving life sentences; another 11 percent are serving over 20 years.

 

Learn more here at The New York Times website.