One of the most heartbreaking experiences is to watch a loved one travel through the stages of Alzheimer’s disease, a cruel form of dementia. One of the hardest jobs imaginable is providing care for them during this time. The proper care requires an abundance of both physical and emotional energy. Providing this care is extremely stressful for the care giver and will take its toll on the person who is not both physically and spiritually prepared to do so.
Along with the physical part (many sleepless nights, lifting dead weight and often having to restrain the person), comes the frustration and the anger. It becomes increasingly difficult not to lose your temper and melt down emotionally to a mass of frazzled nerves. The frustration easily slips into angry outburst and then the feeling of guilt. It is easy to become grouchy or irritable and to lose the sense of who you are while trying to provide the best possible care. Often the care giver does not allow himself (or herself) the time or opportunity to properly grieve. There is always the picture of what is happening to your loved one leering in the shadows of your mind. You are constantly saddened by the realization that it’s not going to get better before the inevitable end. So often, when you have a moment to yourself, you cry, uncontrollable at times. You cannot sleep well. You are lonely and fearful.
Does this sound familiar? For some of you, I know it does.
Even the person with the most loving spirit experiences times of utter frustration and pain when their loved one’s condition constantly declines. It is difficult to feel good about yourself when everything around you is unpredictable and almost to the point of being unreal. It is tough to feel happy when you can no longer find the time to do the things you enjoy and that bring meaning to your life. These are truly times of fiery trials and the most severe tests of your faith. These are the times which drive you to the brink of unbearable frustration and anger. For some, the temptation to lash out at God and everyone around them becomes too hard to bear.
I want to bring this to a more personal level. I am the primary care giver for my mother who has begun this journey into a shadowy world of confusion and mental decline. I want to relay the feelings that I am experiencing in order to demonstrate to those who are experiencing similar situations in the hope that my experiences will bring some solace, some sense of peace.
According to the Alzheimer’s Association, more than 80 percent of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. It’s not difficult to see why. There is a way that has been given to me that will help you. It is important also for those who are not experiencing these trials to understand the gut wrenching pain that those who are suffering experience. The peace that is available is applicable to every situation in your life that brings the stabbing pain of stress.
All of us certainly experience negative feelings from time to time. According to the Family Caregiver Alliance, “when these feelings become more intense and leave caregivers totally drained of energy, crying frequently or easily angered by their loved one or other people, it may well be a warning sign of depression.”
We need to realize that the tough trials that we encounter in life are nothing more than attempts by our enemy to defeat us by destroying our faith in the only source of relief that is available. If, by these fiery trials, we can be driven over the edge of depression and hopelessness, our faith in the one true source can be snatched from us leaving us vulnerable to the onslaught of even greater trials.
Depression amongst Alzheimer’s caregivers is more common than most of us realize and deserves to be treated with the same attention afforded any fiery trial or severe illness. Depression is simply that emotional state of hopelessness that will grip a person’s spirit and rip it to shreds.
In order for you to understand the progression of the disease I have included the stages through which the Alzheimer’s disease travels. This is a devastating disease for the patient as well as the ones who are forced to watch.
Experts have documented common patterns of symptom progression that occur in many individuals with Alzheimer’s disease and developed several methods of “staging” based on these patterns.
Staging systems provide useful frames of reference for understanding how the disease may unfold and for making future plans. But it is important to note that not everyone will experience the same symptoms or progress at the same rate. People with Alzheimer’s die an average of four to six years after diagnosis, but the duration of the disease can vary from three to 20 years.
The framework for this section is a system that outlines key symptoms characterizing seven stages ranging from unimpaired function to very severe cognitive decline. This framework is based on a system developed by Barry Reisberg, M.D., Clinical Director of the New York University School of Medicine’s Silberstein Aging and Dementia Research Center.
Within this framework, we have noted which stages correspond to the widely used concepts of mild, moderate, moderately severe and severe Alzheimer’s disease. We have also noted which stages fall within the more general divisions of early-stage, mid-stage and late-stage categories.
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Stage 1:
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No impairment (normal function)
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Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview.
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Stage 2:
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Very mild cognitive decline (may be normal age-related changes or earliest signs of Alzheimer’s disease)
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Individuals may feel as if they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers.
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Stage 3:
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Mild cognitive decline
Early-stage Alzheimer’s can be diagnosed in some, but not all, individuals with these symptoms |
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Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include:
- Word- or name-finding problems noticeable to family or close associates
- Decreased ability to remember names when introduced to new people
- Performance issues in social or work settings noticeable to family, friends or co-workers
- Reading a passage and retaining little material
- Losing or misplacing a valuable object
- Decline in ability to plan or organize
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Stage 4:
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Moderate cognitive decline
(Mild or early-stage Alzheimer’s disease) |
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At this stage, a careful medical interview detects clear-cut deficiencies in the following areas:
- Decreased knowledge of recent occasions or current events
- Impaired ability to perform challenging mental arithmetic-for example, to count backward from 75 by 7s
- Decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances
- Reduced memory of personal history
- The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations
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Stage 5:
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Moderately severe cognitive decline
(Moderate or mid-stage Alzheimer’s disease) |
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Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may:
- Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated
- Become confused about where they are or about the date, day of the week or season
- Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s
- Need help choosing proper clothing for the season or the occasion
- Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children
- Usually require no assistance with eating or using the toilet
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Stage 6:
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Severe cognitive decline
(Moderately severe or mid-stage Alzheimer’s disease) |
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Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
- Lose most awareness of recent experiences and events as well as of their surroundings
- Recollect their personal history imperfectly, although they generally recall their own name
- Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
- Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
- Experience disruption of their normal sleep/waking cycle
- Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)
- Have increasing episodes of urinary or fecal incontinence
- Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
- Tend to wander and become lost
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Stage 7:
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Very severe cognitive decline
(Severe or late-stage Alzheimer’s disease) |
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This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement.
- Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered
- Individuals need help with eating and toileting and there is general incontinence of urine
- Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.
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Understanding the mechanics of the disease, however, does not lessen the impact that the disease has on those who must watch its progression. The purpose of this writing is not to educate you in the functioning of the disease but to offer a method to finding peace about your situation.
