You Don’t Have to Go It Alone

You Don’t Have to Go It Alone

 

by Alicia Wanek

There is no cure.

It’s what makes a diagnosis of Alzheimer’s disease so scary.  That coupled with the knowledge that you or a loved one will show a progressive decline in mental faculties to the point of not being able to remember your own past, to communicate or to recognize the ones you love.

It’s time this disease had some good news. Consider these promising things, too.  

• The disease is on the decline (thank goodness!).

• Research is showing that proper treatment can drastically improve the rate of progression of symptoms.

• A small but promising study has shown that memory loss in patients can actually be reversed through a rigorous treatment affecting brain chemistry.

• New medicines are improving the quality of life for much longer.

• There are great support services to help family members who are caring for their loved ones.

The diagnosis of Alzheimer’s or other dementias is life changing for the patient, but it is equally life changing for their loved ones, especially the person who will serve as the primary caregiver. As the disease progresses, the patient will likely become less aware of the impact of the disease on themselves or on those around them, but the challenges for the caregiver only become greater.

Pat Warren’s sister Teresa was diagnosed just a year and a half ago, while still in her 50’s.  Their father had been diagnosed in his 80’s, but Pat could have never guessed that her baby sister, nine years her junior, the one she’d helped care for as a child, would suffer the same fate in what Pat calls “the genetic roulette wheel.” Until the diagnosis, Teresa had been working full-time as a medical librarian at a local hospital.  Her husband Stuart had been concerned about a few things but hadn’t started putting all the pieces together.  For example, the couple had recently moved to a new home, but Teresa was having trouble getting to the new house when she was driving home from different places around the city.  When she had a meltdown at work and quit, he was surprised.  It turned out she’d had two performance ratings that had been less than stellar, and co-workers admitted they’d been covering for her for a while because she’d had trouble with some of the routine responsibilities of her job.

Her primary doctor suggested a full work-up. Stuart says, “You almost hoped for a brain tumor because at least that had a chance of being removed and life going back to normal.”  When Teresa was diagnosed with Alzheimer’s, the couple embarked on a new normal.  For the first 6 months, Stuart would go to work and leave Teresa at home.  Still in his 50’s, he had to keep working in order to maintain health and retirement benefits.  But then Teresa started wandering and imagining.  She would roam around outside and get lost and imagined that people were upstairs in their home or that helicopters were circling overhead. Pretty quickly it became apparent that she would need a lot more help.

North Texas residents are lucky to have so many options to get that help for their loved ones.  Senior residences, memory centers and even day care options for patients are available in nearly every community. For those who want to keep their loved one at home, companies like Custom Caregivers can be the answer.

As the name suggests, Custom Caregivers develops a custom-fit plan to meet the needs of all its clients.  Their services include everything from meal preparation to evaluating home safety to medication administration to behavior management plans.  Many of their caregivers have cared for their own family members with dementia, and they all receive training from the Alzheimer’s Association.  Family members rave about the care their loved ones receive.  Daughter Lawon says about her mother’s caregiver Heidi, “Dependable, compassionate, sincere caring attitude. She treats my mom like she is her own mom.”

Most importantly, the staff constantly strives to show respect to the patients.  They work to maintain their routines for as long as possible while treating them with dignity and compassion.  David Stanley, owner and Chief Caregiver at Custom Caregivers says, “Creating understanding and accommodation is empowering.”  The patient’s family—and the patient themselves for as long as they are able—are part of developing a plan that works for everyone.

As Pat says, when Teresa was diagnosed, “it caused some pause” to reflect on the implications.   The family had to figure out how they could work together—with outside help—to assist her sister best.  She and her other sister still enjoy visiting with Teresa and going to places like the movies, though they know she won’t remember having gone.  They can’t see into the future to know where the disease will take Teresa, but they are thankful for the good days and the support they have from each other and all those helping to care for her along the way.