By | Published: February 4, 2011
I don’t remember if I have ever covered this topic, but even if I have, it must be time to discuss or repeat it. Over the past few months, I have heard people express a belief that someone with dementia is using the illness as an excuse for rude or irrational behavior and being manipulative. Honestly, this never occurred to me. Given that most, if not all, of those who are aware of their diagnosis go to great lengths to hide it from others until they feel they have to disclose for various reasons (job loss, giving up driving, decreasing social activities, and even awareness of personality changes), it is counterintuitive that those same people would then, at great personal risk, “use” that diagnosis to justify embarrassing behavior. It seems far more likely to me, that as a way to try to understand what happened themselves, the person with Alzheimer’s disease would say, “I have Alzheimer’s.” Meaning, if I did not have this illness, I would be in control of what I do and say — but since I do have Alzheimer’s, please understand (and accept) that I do not have control and may not even be aware of what I do or say. When caregivers watch the disease progress and see their loved ones become increasingly irritable and argumentative with them, but not necessarily with other people, they may believe it is personal and intentional and respond emotionally. I believe they create more stress for both themselves and the person with dementia (PWA), and that this is a losing battle. Early in the disease, caregivers and friends often disbelieve when we forget. They will go up against the individual or discount that person as being overly dramatic, manipulative, attention-seeking, and taking advantage of their illness. While there probably are situations where that is true, the vast majority of the time, it is not. Because the disease and personality changes progress at different rates with different types of dementing illnesses and some affect personality much more than others, someone can be rational at times and irrational at other times, but they don’t remember being irrational. When they are irrational, the best thing to do is to learn to either steer the subject away from the hot topic or to not take it personally, because quite honestly, it is not about you.
By | Published: January 20, 2011
The health care rollercoaster ride has begun. For decades we have been living in a nation where the cost of care has steadily increased.
By | Published: January 7, 2011
“Cures,” fast fixes, and magic bullets — they sell papers and products, but do they help you? Online news sources have daily “news” of food supplements that claim to prevent Alzheimer’s; some are even touted to reverse symptoms.
By melissa | Published: November 22, 2010
I recently rewarded myself for a pretty challenging year by taking a once-in-20-years vacation without spouse or children to Las Vegas with the best group of softball-playing women ever.
By | Published: November 2, 2010
Reading body language is a skill I am losing. Earlier in this illness, I could feel a disconnect between what people said and did
By | Published: October 20, 2010
I live in a house with a caring partner and our youngest teenager. They go off to their purpose-filled days and I feel at loose ends
Posted in Dementia | Tagged a-great-deal, a-slow-process, alzheimer's disease, appear-healthy, computer, coping techniques, dementia lifestyle, dementia support, feel-at-loose, friends, house, huge-fundraiser, moments of fuzziness, routine-once-, searching-for
By | Published: September 29, 2010
When I was working, my coworkers were my main social network. Although I did not go out and party with them on a daily basis, we did have significant interaction. We celebrated important events, like birthdays, and shared lots and lots of humor.
Posted in Dementia | Tagged advocacy, calendar, camaraderie, caregiving, changed-as-key, coping techniques, daily activities, dementia, diane thornton, game, relationships, social support
By | Published: July 28, 2010
“Listen to the mustn’ts, child.
Posted in Dementia | Tagged a-have-made, a-person-with, based-on-how, dementia lifestyle, dementia support, diane thornton, life, not-fulfilling, people, people-around, schedule-myself, the-impossibles
By | Published: July 1, 2010
The house is dark. The glow of the computer’s power cord blue light is the only beacon in our bedroom.
Posted in Dementia | Tagged a-and-nighttime, a-person-living, a-virtual-chat, bedroom, city, dementia, dementia lifestyle, facebook, night care, sleep, thoughts, topics, uncategorized, youth
By | Published: June 18, 2010
Misperceptions about hospice abound and I hope to clear most, if not all, of them up because hospice is an underutilized gem of specially educated and responsive professionals. The vast majority of people in the support groups I co-facilitate mistakenly believe hospice to be for the last six months of someone’s life and that it is a death sentence. Struggling alone in the home with your loved one is hard on both of you. Hospice can and does provide relief and a feeling of connectedness that continues for years. No one gets on an amusement park ride thinking it will go on forever so I marvel at (mainly) Americans who act as if life should go on forever. Admitting early on that life is a process that is very much beyond our control is key to adding hospice as a regular part of the life and death cycle. This, however, is my opinion and not based in fact. What has been studied are barriers to hospice care . Patients who may know of hospice prior to their diagnosis are not likely to bring it up to their physician. Physicians are reluctant to be honest with patients and families about “terminality”; or what the natural course of an illness (often multiple illnesses) is and both physicians and families falsely believe hospice is “giving up.” Talking early and often in the course of any terminal illness is important and I firmly believe hospice should be in the topics discussed. Educating families about the current (and changing) rules about hospice is the responsibility of the community of care from physicians, nurses, social workers, case managers, and even insurance companies. An initial certification of terminal illness must be submitted and it must show that the illness would lead to probable death within six months. This does not mean you or your loved one will [die], it simply means the average. What hospice provides that a treating physician does not is a team to provide pain relief, comfort measures and nursing care as well as home maker help within the home and sometimes within a hospice building. Patients can go in and out of hospice as their condition improves or new treatments become available. A nurse is available to you 24/7 and returns calls quickly. She can come do an assessment if there is a change, she can consult with a physician and refer to a hospital. You and your family are not left alone waiting for doctors or EMTs to arrive
Posted in Dementia | Tagged a-physician-and, a-regular-part, caregiving, coping techniques, dementia, doctors-or-emts, hospice, life, terminal, topics, within-the-home
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