Caring for a Loved One with Dementia: It Takes a Village

In my last report on Charlie’s journey with his latest health crisis, he had moved to his daughter’s home five hours from me. It seemed to be going well, but then things suddenly took a turn. His daughter found that full-time caregiving in a home setting on top of responsibilities for children, a husband and a home to manage was more than she could handle. At her wits end, they arrived on my doorstep in the middle of the night three weeks ago.

Charlie was ecstatic to be home, while I welcomed him with trepidation. At the end of his hospital stay, I was prepared to place him in nursing home. To have him suddenly returned home, with all VA help discontinued, was upsetting to say the least. The first thing I did was reapply to the VA to have the Home Based Care Plan and Veterans In Place program re-established. This involved a lot of paperwork, and I am still waiting for the services to begin. In the mean time, we are muddling through, but doing surprisingly well. His condition has improved considerably since he was discharged from the hospital. In fact, physically, he is almost back to where he was before a bacterial infection and rheumatoid arthritis laid him flat. However, his mental acuity has suffered. A VA provider gave him a mental test this week in which he scored one-half what he scored six months ago. Today he cleaned his glasses with Whiteout, the product meant to cover errors on paper. In case you were wondering, no—it is not water-soluble. I laughed hysterically as I scraped it off his glasses with my fingernail.


His incontinence has also worsened since his hospitalization. The doctors are not sure what to blame for that; it may just be a result of his worsening dementia. So far, he is able to use a urinal at night, so I can sleep through the night without getting up 5-6 times to help him to the bathroom. The downside was the night he spilled his urinal on the newly cleaned carpet. There was a throw rug in place to catch such spills, but, as luck would have it, it overshot the rug. I’m afraid I lost my cool over that one. Charlie’s love affair with wine seems to be history, though. After six weeks of hospital sobriety, I decided to try playing the fool’s game. Whenever he asks for a glass of wine, I pour him a “cocktail” of red or white sparkling grape juice, fruit flavored water and ginger ale. He has never questioned what kind of “wine” he was drinking or noticed that he did not get the expected rush from the drink. After nine weeks of “freedom” while Charlie was in the hospital and with his daughter, I have found the confinement resulting from caring for someone with mental and physical ailments to be stifling and exhausting. Once I have some helpers in place, the job will not be so daunting. I can’t imagine what many of my readers are going through with little or no help available to give them a break from the stress and loneliness of caregiving. It only took Charlie’s daughter three weeks to realize she couldn’t do it, but she had a solution to her dilemma that many of you do not have access to. God bless you all.

Dementia Signage for the Home

20% Off

Weekly Planner (Bright Pink) Memo Pad

$30.95

Weekly To Do List Notepad (White)

$30.95

EZ-C Bold Yellow Weekly To Do List Notepad

Red Dry Erase Board

Dementia Signage for the Home

$22.75 - Financial Records Organizer Vinyl Binder

$22.75 - EZ-C Bright Green 3 Ring Binder

Caregiver Dancing on the Deck – a JOYOUS Vacation

 

 

Guest article by caregiver, Lynette Wilson Juul.

 

Working as a caregiver, I’ve been privileged to travel with some of the people I serve.

 

There is one particular journey; however, that is etched forever in my mind as the most joyous vacation.

It happened ten years ago. My traveling companions were a group of aging developmentally disabled individuals, many of whom were also diagnosed with dementia! Talk about a fun group!

 

I had not worked with this population before and didn’t realize that they are just as susceptible to dementia as others without a developmental disability. It seems aging is the great equalizer with debilitating diseases. My traveling companions already afflicted with one cognitively impairing disease, also suffered from symptoms of this SECOND cognitively impairing disease.

 

Happily, they also ENJOYED the same types of activities as other people with dementia, such as singing, dancing, reminiscing, and vacationing in their favorite “spot!”

 

In this case, the “spot” was Lake George, New York, a tourist town at the base of the Adirondack Mountains.

Many of my traveling companions had spent much of their adult lives in state institutions. Vacations were NOT part of their limited lifestyles. After the institutions closed, they integrated into communities across the nation. And they began to experience the same types of pleasures anyone would enjoy … including an annual vacation!

Like so many other “normal” people, the same vacation “spot” every year was just fine!

 

I was welcomed aboard as an extra staff member on one of the group’s annual trips. I was able to experience the genuine JOY of these amazing individuals, first hand! It was truly an inspirational and unforgettable journey.

 

 

Interestingly, the typical tourist traps didn’t resonate with my group as strongly as did the little things, like having coffee at an outdoor cafe or buying trinkets at a gift shop.

The trip, of course, had a highlight, which occurred during a four-hour luncheon cruise on the lake’s largest tour boat, the Lac du Saint Sacrement.

 

The luncheon itself was amusing, but NOT the actual highlight. For these folks, typically happy with a hotdog or hamburger, too many food choices proved quite a challenge! Like anyone with dementia, trying something new can be a trying experience.

 

The real fun came after lunch, when we were treated to some music on the ship’s main deck, courtesy of an awesome one-man band!

 

Listening, singing, and dancing to music are by far the most enjoyable activities for many folks with a developmental disability. Like anyone with dementia, the old tunes help him/her travel back in time. And from a caregiver’s perspective, I am given the chance to catch a brief glimpse of who that person was before being robbed of their cognitive functioning.

 

What a glorious sight to see!

 

During an especially popular old ditty, one of my traveling companions, a flirtatious fellow, grabbed my hand, dragged me to the center of the deck, and with a wide grin said, “Let’s dance, Honey!”

 

We did while my dancing partner reveled in stories of the numerous “Honeys” he had danced with over the years.

Soon, other folks began to join us on the dance floor, and laughter and singing filled the air!

 

I experienced an epiphany that day. As I watched my companions dance on the ship’s deck, I realized a fundamental truth about the debilitating disease of dementia. It doesn’t choose its victims based on their level of intellectual functioning. No. My developmentally disabled traveling companions were just as easily targeted as anyone else.

 

And like others with dementia, a familiar long-ago melody could bring them back to a special place in time.

I’ll never forget dancing on the deck with my jubilant partner. In spite of being diagnosed with two cognitively devastating diseases, all that mattered to him was the sheer JOY of being in that moment.

 

It’s certainly a lesson we could all benefit from, whatever challenges we are facing.

 

 

Lynette Wilson Juul, MS has experienced the joy of caregiving both professionally and personally. For twenty-five years, she assisted people with a variety of disabilities. During the past decade, she has narrowed her focus to aiding families who have a memory-impaired loved one living at home. This has included her father-in-law, Ole Juul, who lives with dementia in the Bay Area of California. Lynette and her son Peter were featured caregivers on The Caregiver’s Voice.

Dementia Signage for the Home

20% OFF ALL Orders + FREE Shipping!

Ends Tomorrow

"Don't Make Me Use My Sponsor Voice!" Tshirt

5150 T-Shirt (Black)

Sobriety Works T-Shirt

"an Apple a day keeps my sales away" Red Tshirt

"ONE TEAM ONE TOWN" Tshirt (Navy Blue)

"Gratitude Works" Ladies T-shirt (Pink

When Simple Things Become Overwhelming

When dementia strikes, even the simplest things can be overwhelming.

This was the case with my father who had a habit of postponing making decisions until later.

When I think of it, my father constantly put things off until later. My mother used to remind my father (he called it nagging) to take care of things, now. “Mardig, check the car now, before we leave for California,” she’d remind him each weekend before our summertime Wisconsin to California trip. He’d reply, “I’ll get to it, later.” Long after I went to bed, he worked on that car in the dark to make sure our old 1967 Pontiac was dependable enough to make the cross-country trip.

In 1976, a month after I graduated from high school, I sat in the back seat nervously waiting for the Pontiac to break down. It was only a matter of time and it was embarrassing for a teenager to witness her mother begging for help each time. Despite the many patches my father put on that car, we managed to cross the Mojave Desert in the predawn hours with no incident, and after touring Hollywood Hills, we landed square in the middle of Beverly Hills where the old Pontiac gave up after overheating.

My mother figured people in the Hills would be gracious but no one was willing to help as she went from house to house. It wasn’t until we ended up in the poorest area of Los Angeles (where people fear to tread) that we met the kindest caring people who ensured we had what we needed and were safely on our way.

Years later, and after my mother passed, dementia began stealing pieces of my father’s life. Try as hard as he did to hold on, the big D’s power could not be subdued.

After I came to visit him in Wisconsin for what would be the last time, I found a few of those pieces he had set aside to look at later.
One of them yielded a surprisingly significant windfall…

Don’t laugh too hard when you watch this, because we all set aside things to deal with later. Soon, they’re long forgotten until we take steps to clear the clutter out of our lives.
Click here to watch The U.S. Saving’s Bond Windfall – $100,000 on a bookshelf a brief 3-minute video excerpt from the Porterville Adult Day Center’s Annual Caregiver Conference. (I apologize for the poor audio and the video composition.)

Or click on the image below.

About the Author

 Brenda Avadian, MA, Executive Director, founded The Caregiver's Voice in 1998 while caring for her father who lived with Alzheimer's disease. As a prolific author and national spokesperson for family caregivers and professionals, she brings hope and strength to caregivers with knowledge, support, and humor.

See all our products at Dementia Signage for the Home