Caring For A Loved One With Alzheimer's
L.C. Morris introduces us to a local woman all too familiar with the stages of early onset of Alzheimer's disease. We hear from her perspective what effect this devastating disease had on her family, and how doctors are often diagnosing dementia in tandem with other illnesses.
There is a saying that when life smacks you down; get back up. But what do you do when you’re down and have no recollection of how you got there better yet where you are or who you are? As we age, our bodies, naturally deteriorate, so do our minds. It happens especially rapidly for some people.
This process has been going on silently in our brains for years and years and years. By that time the brain has already taking a number of hits.
Dr. Daniel Kaufer is the director of UNC Memory Disorders Program. By training Kaufer is a Cognitive Behavioral Neurologist. He specializes in higher cognitive functioning and behavior.
Certain types of memory problems; where we forget things that happened, where we repeat ourselves. Where we get lost in familiar area, those are things that are not typical of normal aging. Those are more in line with the warning signs that we typically see with Alzheimer’s disease.
Alzheimer’s disease is characterized by a decline in the ability to perform routine tasks, gradual memory loss, confusion, loss of language skills and impaired judgment and planning. It is the most common cause of dementia.
Alzheimer’s really isn’t a single disease and it’s kind of a final common pathway where many different types of problems can contribute to what we call Alzheimer’s disease. We know that general medical problems like hypertension, and diabetes and obesity; that they are all things that can impair brain function and get us one step closer to getting the signs and symptoms of Alzheimer’s.
Kaufer, who is also the co-director of the Carolina Alzheimer’s Network, says that when identifying symptoms of Alzheimer’s many people liken it to getting/growing older or in some cases ‘just having too much on their plates’. Jerry Scoggins, who was very successful in international sales, is now in a comatose like stage of Alzheimer’s.
He knows me. He knows I’m someone special. He holds my hands and we walk and that all we do. We don’t talk because there is very little words that come out. But a lot of times once he sees me and we get our hugs, he just walks right on. So sometimes the connection is just a nanosecond.
Sue, Jerry’s wife, quickly learned that Alzheimer’s isn’t just a disease that attacks the elderly it can strike at any age. Jerry was just 51 years old when he was officially diagnosed and between 49 and 50 when he started displaying symptons of early onset.
One day he had an appointment down in Miami at 10’clcok in the morning and at the time we lived in Raleigh, NC so he got up at 5:30 in the morning and headed out the o the airport. He was going to catch the first flight; first nonstop from Raleigh to Miami and about 9:30 in the morning he called and he says ‘Sue’ and I went ‘where are you, you suppose to be in Miami.’
Like most people, Sue, thought that Jerry was overwhelmed with his career and at one point thought he had attention deficit disorder.
He was so preoccupied with what he was doing. He’s was always an overachiever. So it really would turn into a typical marital spat. It was a little stressful that year. So neither one of thought anything serious was going on. I believe once we started going to the doctor he started, you know, really evaluating what was going on (like something must be wrong). The first time he went to our internist, at that point, they immediately said you have early onset Alzheimer’s. It was just very matter of fact; that was not a very good day.
According to the North Carolina division of Aging and Adult Services, North Carolina currently has over 170,000 older adults with Alzheimer's disease or other types of dementia. By 2030, the total number is projected to rise to over 300,000.
Identifying Alzheimer’s early on is very important because over the past 10 years studies for potential therapies haven’t proved beneficial. Dr. Kaufer explains
I think what we learned from that is that in order to really address the disease in a significant way we are going to have to catch it early on. The goal we have set; we’re a long way from that. From that being a realistic possibility, but I think we are clearly starting to move in that direction.
Alzheimers’s disease is the sixth leading cause of death for people all ages and the fifth leading cause for adults over 65, according to the North Carolina Division of Aging and Adult Services.
His initial diagnosis was not Alzheimer’s, it was frontal lobe dementia. The reason they thought it was frontal lobe is because he lost his speech right away. He could not put a sentence together. More than five words, he could not put it together. I remember going to bed that night and we were laying in bed; the first thing he said was ‘how do you have a relationship with God when you’ve lost your mind’ so he was fully aware that he was going to lose his mind.
The North Carolina Behavioral Risk Factor Surveillance System Survey indicates that 28% of North Carolina residents are providing regular care or assistance to an older adult with a long term illness or disability. 65 year old Jerry now lives in a facility.
There were many days I would walk and just, like, scream while I was walking and yell out ’God how am I going to do this, I can’t do this’. It was getting so all consuming. He would never let me out of his sight. I mean I couldn’t take a shower. I couldn’t walk upstairs or downstairs. He would follow right behind me as we were tied together. I couldn’t ever get a way. I had two days a week where I would have a companion come in for a couple of hours to take him on a car ride so I could sort of collect my thoughts. So I could take a shower (chuckles) what a noble thought, or to go to a grocery store by myself
The decision was one that Sue struggled with after all she had uprooted herself and Jerry from Raleigh and moved to Emerald Isle. Sue figured that the Crystal Coast would provide Jerry an opportunity to try to be at peace with himself. All the while, thinking that keeping her husband active would stave off his deteriorating condition. Of the fourteen years they have been living with the disease, for twelve of them Sue was Jerry’s primary caregiver. It can be valuable to know the warning signs, of early onset Alzheimer’s, ranges from trouble understanding visual and spatial relationships to misplacing things and losing the ability to retrace steps. Dr. Kaufer says not only is there not a cure for dementia it definitely doesn’t exist by itself.
There are many folks who have mini strokes, or who have cerebral vascular disease, that have cognitive symptoms that have a combination of Alzheimer’s and cerebral vascular disease. This kind of brings up the medical issue of why primary care can play such an important role. There have been studies that have shown that people with changes of Alzheimer’s in their brain, but not show the clinical signs until or unless they also develop mini strokes of cerebral vascular legions. And it’s only the combination of mini strokes and the Alzhiemer’s changes that you see clinical symptoms.
The stages of Alzheimer’s disease can take its toll on everyone involved. Sue started painting as an outlet and a blog, suescoggins.com, detailing her journey. For more information on the early detection of Alzheimer’s, go to publicradioeast.org. I'm L.C. Morris.
For more information on the early detection of Alzheimer's disease: http://www.alznc.org/index.php/alzheimers-questions-answers
To read Susan Scogggin's blog: http://suescoggins.com/