‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:

www.philly.com/philly/health/health-news/mom-i-didnt-steal-coping-when-dementia-turns-to-delusion-alzheimers-psychosis-depression-20170709.html

Health
‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer

Robin

 

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

“My caregiving is wearing me out. What can I do?”

This is a post from last year about dealing with caregiver burnout.  Suggestions shared include:
* ask for help
* eat healthy foods
* increase exercise
* have a good attitude
* stay connected to your support system
* understand your strengths and weaknesses
* be proactive

The post is from the Benchmark Blog, which is a blog run by Benchmark Senior Living, senior living communities in the northeast.  See the blog post below.

Robin


www.benchmarkseniorliving.com/news-room/dear-jayne-my-caregiving-is-wearing-me-out-what-can-i-do

“Dear Jayne, My caregiving is wearing me out. What can I do?”
October 15, 2016
by Jayne Sallerson, 20 year veteran in senior care
Benchmark Blog

Dear Jayne
I love my mom dearly but some days can be such a challenge. She has Alzheimer’s, and I’m afraid of the toll it’s taking on my health, my family, on everything! What can I do?

~~~~~

It’s not easy, we understand. When every day can be so different, it’s natural for a caregiver to take a back seat to their loved one and put themselves second.

The truth is, caregiving can be tough work. The emotional and physical demands involved can strain even the most resilient person. But you need to take care of yourself. After all, the healthier a caregiver is the better able they are to support others.

“You can do just about anything as a caregiver, but you can’t do everything,” Galyn Corneby advises. Galyn speaks from experience—she is a long-time Benchmark associate and winner of our 2016 Compassionate Caregiver Award. She shared a few of her tips.

“It’s ok to ask for help when you need it.” Everyone needs help sometimes. It can be as simple as having someone help pick up the groceries, make a meal, or stop by for a visit.

“Eat good, healthy foods.” Avoid grab-and-go mealtimes. If you’re going to build resiliency, good nutrition is one of the keys. Try to eat foods that have a lot of vitamins and minerals in them, such as fruits, vegetables, whole grains and low-or nonfat dairy. Our VP of Dining Experience Guy Hemond, who is also an award-winning chef, suggests these few fast and healthy snacks (benchmarkseniorliving.com/news-room?article=recipe-of-the-month-fudgy-fruit)

“Up your exercise.” What? Who has time!?! But here at Benchmark, we like to call it ‘Multi-tasking Fitness’. While sitting at your desk or paying bills, put a workout band around your knees or ankles and work out your legs and hips! One of our associates actually does leg lifts and crunches while lying in bed watching the evening news. Our compassionate caregiver Gail Corneby told me she takes mini exercise breaks during her day. Me? I put appointments on my calendar to exercise—with myself!

Having a good attitude, staying connected to your support system, understanding your strengths and weaknesses, and being proactive are just a few of the ways you can take better care of yourself. It’s largely about recognizing that you do have choices, and the importance of making the ones most likely to support you in your caregiving role.

Let me give you two more places to turn. Our website (benchmarkseniorliving.com) and blog (benchmarkseniorliving.com/news-room) have some great articles on caregiving. Be sure to also check out the Alzheimer’s Association website (alz.org) and their tip sheet on “Important Self-Care for Alzheimer’s Caregivers.”

Until next time,
Jayne

 

“Dying Words” (beautiful story from WBUR, June 13, 2017)

This is a beautiful story about words and an idea for those of us who have loved ones losing the ability to speak.

Alice Saunders had a close relationship with her father Arpiar Saunders.  When Alice was in her 20s, her father started mixing up words — pina colada for pinata, for example.  He was diagnosed with frontotemporal degeneration, which can affect speech.  “As his vocabulary shrank, Arpy would endlessly repeat the words he still had.”  Eventually, “there were just two full phrases that her father could still say.  One was ‘proud to be your dad,’ and the other was ‘I love you.'”  Alice said:  “I’d get voicemails sometimes that was just like, ‘I love you, I love you, I love you, I love you, I love you’ for five minutes straight. That’s what he could say at the end.”  After her father died, Alice’s boyfriend gave her a flash drive of all of her father’s voicemails over the last year.

Perhaps those of us who have loved ones losing the ability to speak can find an idea here — record your family member speaking before their voice disappears.  I have a few hand-written notes from my father that he made before he lost the ability to write; those are very precious to me.

The full article is available online.  Plus there’s a six-minute audio story that aired on June 13, 2017 on WBUR (Boston) at the link:

www.wbur.org/kindworld/2017/06/13/kind-world-39-dying-words

Kind World #39: Dying Words
June 13, 2017
WBUR
by Erika Lantz

Robin

NYT story about adjusting to neurological decline

Though this New York Times article is about a former baseball pitcher Jim Bouton with cerebral amyloid angiopathy (a type of dementia), I think the article is of general interest.  The end of the article is about the wife and family identifying what the husband can still do, and adjusting around that.  This applies to all of us coping with neurological decline.

Here’s an excerpt:

His wife Paula “Kurman calls his condition a pothole syndrome: Things will seem smooth, his wit and vocabulary intact, and then there will be a sudden, unforeseen gap in his reasoning, or a concept he cannot quite grasp.  … In her work with brain-damaged children, Kurman said, her boss would tell her to think about what remains, not what is lost. It is a lesson she applies now. Her husband can still make her laugh, still make her think. … And he can still pitch.  ‘You need to learn that the person is still that person, and you have to focus more on what he can do, rather than what he can’t do,’ she said. ‘And then you adjust.'”

Here’s a link to the full article:

Robin