By Nolan Patrick Smith
High Desert Daily
(Victorville)– Alzheimer’s is something that many don’t want to think about, but with a series of articles we hope to shine some light on the subject as to what it does, the severity of it and what type of help is available right here in the High Desert community. For the first article, we sat down to speak candidly about the disease with people who see it firsthand: the employees at Odyssey Hospice in Victorville.
Mary Hennessy-Fischl, RN, the Executive Director of the Victorville office and Larry Kingman, RN, Case Manager took time out of their extremely busy schedules to speak about Alzheimer’s. First diagnosed by German psychiatrist and neuropathologist Alois Alzheimer in 1906, Alzheimer’s is the most common form of dementia. The disease is the 5th leading cause of death for people over 65, and with 10,000 people turning 65 everyday since 2011, Alzheimer’s is something that needs to be understood by our community in the High Desert to better treat this disease.
“It’s not the normal “how come I can’t remember that guy’s name?” Hennessy-Fischl explained.
It’s not that.
“It’s the functional. I have heard the nurses describe someone picking up a spoon and not knowing what to do with it,” Hennessy-Fischl said in regards to what the disease entails. “All of this (Alzheimer’s) is found post mortem, so you can’t walk in and say I’m going to diagnose you today. It’s all after the fact when they have done autopsies. What they find is these webs, clumps if you will, that are in the brain. Just think if these were anywhere else in your body, they would obstruct whatever function it is. It works through the different lobes in your brain, and that is how you can track the digression, by what lobes have been affected.”
Kingman elaborated on the effects of the disease: “You can look at it like a bell curve. You start when you are born, and you start learning things. Then you come up to a good point when you are fully functional, and most people pretty much stay there. Then you have the Alzheimer’s where you unlearn it in reverse. They get lost in their own environment. We don’t try to cure it, because there is no cure. Instead we try to manage the symptoms; the symptoms like anxiety that might come along with that,” he stated.
The symptoms span over seven stages, according to Hennessy-Fischl, with stage 7 being the terminal stage where hospice can be brought in. “For dementia, including Alzheimer’s, there’s a fast score, functional assessment staging scale, it is a seven part stage. As you go through, it’s a digression. You can actually coordinate it with different parts of the brain as it affects that part of the brain. For us, when somebody gets to stage 7 on, that is what is considered in stage dementia.”
The stage breakdown goes as follows: stages 1-3 are considered mild. At stage 1 stages, a person is very functional, much like we all hope to be. Stage 2 sees some memory loss, with perhaps a need for a calendar to help in that area. With the third stage, the person can begin to act like a young adult, displaying some of the irresponsibility associated with that age group. The parietal lobe is what the disease affects at that time. With stages 4-5, they are considered moderate. The function of the person is now that of a 7-5 year old as the occipital lobe is now affected. The occipital lobe controls your visional processes, so vision can be affected in various ways. Stage 6 is severe, with the functions of the person now lowered to the age of a toddler. In this stage, everything in the environment can be misinterpreted. Then at the last stage, stage 7, the functions are now of a 24 months old to an infant. Total care is needed, and this is the stage in which hospice can come in and help.
Hennessy-Fischl elaborated on dementia, and the large time span it can run, “The thing about dementia, all types of dementia, is that it’s about a 10-year span. Then the end stage, you think in stage disease in most is weeks to months, but in dementia it can be 1-3 years, so it’s a long time on the caregiver’s side too to deal with ‘this isn’t my loved one anymore,’ this is a shell, and this isn’t even the same personality anymore. But you still have this person to care for.”
“It’s like a plane landing, we try to glide the plane in instead of crash. It can be rough, but we try to glide it in as soft as possible,” Kingman added in helping to understand the mysterious disease. “A lot of time the family is overwhelmed by the time they call. We let them know that they are not bearing the burden by themselves anymore, they have someone they can call.” Making the call for hospice is one of the hardest decisions many will ever have to make, and a certain promise we have all heard only makes it harder.
“The promise that nobody should ever make is ‘I will never put you in a nursing home,’ that statement needs to be removed, because you set yourself up for incredible guilt and punishment that is so unnecessary.”
Hennessy-Fischl touched on as many make that promise without fully thinking of all the ramifications. “You have to worry about safety. Our gold standard is ‘if there was a fire in the house, is mom OK? Would mom be able to get out?’ If the answers no, we need to look at other things. In assisted living facilities geared towards dementia patients; they’re locked, they’re safe, they can actually go outside but it’s in a protected area. If they need to be up all night and sleep all day they can, it’s a designated dementia unit.”
There are a few choices for assisted living facilities in the High Desert, which can help if you feel your loved one may not be safe on their own. “In the desert, we have three facilities very much geared to dementia and I know they are all very active with Alzheimer’s support groups and thank kind of thing, because its a lot to take care of somebody.” Facilities include Foremost in Hesperia, the Sterling Commons in Victorville, and Valley Crest in Apple Valley.
Hennessy-Fischl and Kingman both offered some tips on how to help manage the symptoms of Alzheimer’s, including how lowering the lights can really help. “It’s good to have them non stimulated. So if you have a violent TV show, you have the vacuum on, the lights are on: they’re agitated, they’re scared,” Kingman stated.
Another way to help is with routines, which may come as a surprise to some according to Hennessy-Fischl, “It’s interesting, when you read about brain health, they tell you to break up your routines, don’t make everything so set in a path. Do crossword puzzles, do mind stimulating things, because again it’s the kind of ‘don’t use it, you lose it philosophy.’ But once you’re here, you do need the routines.”
Caring for a loved one with the disease is never an easy thing, but the smallest display of attention and affection can mean everything to them, as Hennessy-Fischl explained. “It’s amazing how much soft music, reading to people, hugs and touch, and tactile stimulation helps. When you think how this is such a terrible disease, it lasts for ten years. But if you can make even a tiny bit of difference for the time that you are there, for the moment because they are living for the moment, then that means the world to them.”
For more information on Odyssey Hospice and the various services they have to offer, feel free to call the Victorville branch at (760) 241-7044 or visit their website at www.odsyhealth.com.
Our series will continue with exploring High Desert perspectives of those who live and deal with Alzheimer’s everyday.