By Mike Donohue
Alzheimer’s Disease (AD) is a family disease; AD is a community disease. The toll it takes on all affected is an equal opportunity purveyor. There is so much that is direct loss from this disease. If not immediately it becomes manifest as it progresses. This is felt first at home, in different ways by the one afflicted. Equally if not more this is the effect for the caretaker assigned the task of taking over as if by default. AD doesn’t do job interviews for the position of caretaker.
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The family and the close around loved ones are next on the list. Things change with the onslaught of the disease. AD produces an abrupt and all encompassing paradigm shift. Every aspect of life for afflicted and the caretaker is altered. Like a death in the family everyone within the orbit of the relationship must reshape the terms and manner of affiliation.
A new leader often takes over with a husband or wife, a father or mother. The caretaker becomes in charge. The one afflicted becomes the vulnerable dependent in the relationship, not only with the caretaker but also with all of the others.
Where once there was less need there becomes more need particularly for those most closely affected. This is the time that the true test of family, of closeness, of purpose for having the relationship is put to test.
This adds to the abrupt permutation in all of the relationships often producing the MIA (missing in action).
These are the direct effects of the onslaught of AD. The more indirect or invisible affects of the attack of the disease are these:
The Denial by those in the orbit is the most dissembling of them. Denial speaks silently but loudly of the many proffered reasons for it.
Denial tells those on the receiving end their integrity, honesty and esteem are in question by the denier. It diminishes the denied by the discount inherent in the denial. What’s the matter with you? Are you a hypochondriac? Are you but a child looking for attention? Don’t I have enough to do without worrying about you too?
It takes issue with the bond thought to exist between the denier and denied. There can’t be much love there if it is expressed with the turn of your back, the non-concern and non-attention, the implied or spoken statement: “I am just so busy I don’t have time for anything.” This message leaves the conclusion, “I must have been mistaken when I thought myself loved and wanted in their life. I don’t really matter to them after all.”
Loneliness and isolation result. A synergy in decline often comes of this. This accelerates the progress of the disease like nothing else.
This produces the negative effect of denial on the community.
Denial is infectious. One does, the rest can do the same. It is easy to do for the one afflicted to believe this terrible thing is not happening. Denial leads to delay in diagnosis and delay in remedies available to slow the development and prolong Early Stage. The end result of this is cost to community in which institutionalization is needed more quickly.
The more one of us afflicted with this disease can maintain quality of life in the Early Stages, while we remain relatively functional, able to contribute to our own care; we are not costing the community. We stay at home and in major ways between the caretaker and ourselves we can handle most things needing to be done because of us.
Nonetheless, help is needed. If it is not coming from family and loved ones; that is when having and dealing with AD starts becoming insurmountable. Dealing with AD under the best of conditions is difficult. After AD everything becomes incrementally harder. It is here that help from others is so important and the consequences of not getting it so devastating.
The length of time it takes AD to do its number is the harshest part of this disease. The slow death feature of it is intolerable. Compared to so many of the other catastrophic diseases such as ALC, Muscular Dystrophy, Lupus, Multiple Sclerosis, to name but a few, AD ranks right up there with them. To get any one of them is overwhelming to the family system.
The difference perhaps is in the number. Quantitatively it is hitting more people more suddenly as folks live longer and Boomers reach the age of risk in the numbers they are quickly coming to do. The progress of the disease is more subtle more easily denied.
This article explains denial and lists its effects succinctly, concisely and with impact. It has such merit I had to add my part to it.
To visit Alzheimer’s Afterthoughts! and read more by Mike Donohue -- go here.
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Original content the Alzheimer's Reading Room