Do You Know This About Alzheimer

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Alzheimer's ...for caregivers

Do You Know This About Alzheimer's Disease? ©

one has to wonder....

...why home care is the best kept secret in the Alzheimer's movement.	...why this 'disease' justifies the withdrawal of love more than any other..
...why so many of us find peace and closure... in spite of the communication barriers.	...if more would find a sense of accomplishment in their caregiving if the stigma of Alzheimer’s was removed.
...if our spokespeople have examined, adequately, the way in which our family members are dehumanized by the media.	..if it really matters if our people know who we are when we still know who they are.

* Contrary to belief, the majority of care is not done in nursing homes. According to the National Alzheimer’s Association statistics, 75% of the care is being done at home, usually by a family member. That translates into 3,000,000 out of the 4,000,000 who have this disease, at home with a lone caregiver, who is isolated, left with few resources, and little encouragement. The remainder of care is done with a combination of family/private pay, group homes, supported living arrangements and nursing homes. Less than 10% of the care is done in nursing homes.

One has to wonder why home care is the best kept secret in the movement.

* National television and the media at large has yet to address the positives that exist in the home care choice for Alzheimer’s families. Home-care has yet to be offered as an option on the talk shows in spite of the fact that over 75% of the care is done in the home. The media as a whole, has yet to portray an Alzheimer's patient in the last stages of this disease and still at home, and loved in spite of this illness. The standing rhetoric, the usual clichés, the public image of this illness is never challenged on these shows. I have yet to hear the humanity and the innate worthiness of those who get this disease for love and regard, even mentioned as a possibility yet alone a need for our people.

Keeping in mind that the point of these shows is to impress on the public the horror of Alzheimer's in the hope that the horror will motivate them to demand research money to eradicate this disease, these shows nevertheless miss the mark. As one example, one does not see Jerry Lewis talking about 'his kids,' in terms that deny their humanity and yet the public knows full well the horror of Muscular Dystrophy. And yet our people are routinely portrayed as non-entities and with the sanction of everyone. The thought that a disservice is being done both to the people who get this disease and those of us who care for them, doesn't even seem to surface in anyone's mind. *The Phil Donohue Show, 7/10/96, stands out as an example of just this problem.

I began to wonder if part of the problem has to do with our own spokespeople who are the driving force behind these programs. The majority of these people, however dedicated they are to eradicating this disease, either made the nursing home choice themselves and have only that experience to draw from personally, or they are professional fund raisers who never faced this illness in their own families and have only the standing rhetoric and negative bias that surrounds this illness to draw from for their information. Aside from issues that surround the nursing home choice, which affect in reality, a relatively small portion of the caregiving being done, the needs of over 75% of the caregiving population with this disease are largely ignored. We need improved home-care services in order to make our jobs doable which cannot happen without public support, and the public needs to be sensitized to the fact that our people deserve the same considerations for love, regard and touch as do "Jerry's Kids."

I have begun to wonder if our spokespeople have examined, adequately, the way in which our family members are dehumanized by the media.

* Our people are routinely stripped of their worth as human beings because they lose their ability to think and communicate. That is discrimination at its worst. It is nothing less than bias that is so accepted it isn’t even recognized as bias. People in comas are afforded more regard than are those with Alzheimer’s. As a result, caregivers, who ignore the rhetoric, who see continued connection, who honor their commitment, who struggle alone, are smugly characterized as symbiotic, martyrs, co-dependent, potential abusers, or saints, depending on who is casting the role, and that’s everyone from doctors to uninvited strangers. Our people are dismissed as having no valid reason to live, but they do live, for years until this disease kills them, and I’m not sure euthanasia or institutionalization is any more valid a solution to their care needs than it is for a developmentally disabled child.

One has to wonder why this ‘desease’ justifies the withdrawal of love..

* Those who make the nursing home choice aren’t being dealt with properly either. Guilt is too easy a label to fling at people experiencing grieving. While they mourn the losses, they also feel a sense of failure, no matter how irrational, that goes hand-in-hand with the nursing home choice. Telling family members to ‘not feel guilty,’ really doesn’t help them much and it trivializes the enormity of their choice. In comparison, we home-caregivers more often come out of our experience with a sense of accomplishment and peace, partly because we don’t miss the moments left to share. We also find the tasks are merely tasks, they don’t reflect on who we are as human beings. What caregivers feel is fatigue, abandonment, and loss. What we don’t feel is guilt.

One has to wonder if more would find a sense of accomplishment in their caregiving if the stigma of Alzheimer’s was removed and more options and support were offered.

* The end-stage home-care tasks aren’t different from any other terminal or chair-bound person. While our caregivers face a myriad of problems unique to this disease during the early stages, with information, basic skills, respite and a positive attitude the care needs can be met at home until death. The horror of Alzheimer’s is really about communication, unresolved issues, and mourning what should have been, but those issues face everyone with terminal illness. Unfortunately, people don’t resolve issues even when they can talk to each other.

One has to wonder why so many of us find resolution and closure in relationships once thought to be insurmountable in spite of the communication barriers.

* Alzheimer’s is probably, the only illness that can truly be described as being the opposite of birth. The Alzheimer’s brain shrinks as the disease progresses and the layers of learning are stripped away in much the same order in which they were laid on from birth. At death, the brain resembles that of a newborn infant. Emotion, the first thing a newborn experiences, is necessary for their survival and bonding instincts. Emotion is the last thing an Alzheimer’s person retains. They respond to love, nurturing, acceptance, touch, body language, inflection in voices until the moment they die. If our caregivers have a mission it is to help their family member regress with the same respect they afford an infant’s development. I ask you, how do caregivers recognize the ramifications of their role, how do they face this challenge if the only message they get is: "You can’t do it," and more important: "You are crazy to try!"

One has to wonder if it really matters if our people know who we are when we still know who they are.

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