My wife passed away last year due to complications of Lewy body dementia (LBD). Naturally, I have spent much time reflecting on our life and her journey that we shared together. I have listened to many caregivers relay their stories and express their frustrations while caregiving. I hope that my reflection might offer a little comfort and maybe revelation through your own journey as caregivers. I am not a doctor, and I don’t have any formal expertise; I’m just a former caregiver who cared, like you. I have come to believe that there are three main types of caregivers for those caring for loved ..read more

Written by M of NY, a Caregiver to her Husband: Several years ago, my husband began, some evenings, yelling and laughing, punching the air, and flailing his arms and legs around in his sleep–even once throwing himself into a corner of the nightstand. Other times, he had minor muscle jerks in his hands and legs, all without waking up. He would have no memory of these experiences in the morning, or if I woke him up during one of these times. To stay out of harm’s way in the evenings, I’d move to another bed to sleep. We had purchased a larger mattress, for more room for him, but that did not hel ..read more

Written by M of NY, a Caregiver to her Husband: A topic I feel is very important is the loneliness of having a life veer off course from a newly diagnosed serious illness. You have already begun to notice things you don’t understand, and this can be confusing and unsettling. Knowing you are part of a community of people and their partners who are living with this illness, that you have peers to talk with who know what you are talking about, and that everyone has language for this conversation, is valuable. Even once you have been given the name for the illness, the early stage of living with L ..read more

In the previous blog about Hallucinations and Delusions, we addressed handling the more simple, non-frightening hallucinations and how to keep from escalating the situation. But what to do when the person with LBD is experiencing a hallucination that is extremely frightening and by its very nature, throws the situation into a delusion that must be handled and dispelled to keep the person calm and safe. A person hallucinating is seeing (or hearing, tasting, feeling) something that in reality is not present. Most often it involves sight, but other senses can be involved as well. A delusion is a ..read more

Being with a loved one who is experiencing hallucinations is a disconcerting experience and can actually feel very frightening. In this blog, we will address “simple” hallucinations. In part 2, we’ll talk about the more complex situation of delusions with or without hallucinations. Fear is often our first reaction when our loved one with LBD sees things that aren’t there, because it makes us feel disoriented and out of control. But it is often nothing to be frightened about. So, with the initial realization that your loved one is seeing something that is not there… Take A Breath. This may feel ..read more

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  The Doctor Visit by Pamela Rosenblum            Once a person has been diagnosed with Lewy body dementia (LBD), it is important to establish a good working relationship with the specialist, usually a neurologist, who is involved in their care.  Because of the nature of LBD, the visit with the physician can become fraught with emotional conflicts.  Often as a caregiver you want to let the doctors know what has been happening, about any changes in the behavior of the person with LBD, what you observe about the effect of medications, etc.    ..read more

Incontinence with Dignity by Marilyn Stevenson Almost everyone’s biggest fear is incontinence. Here is some helpful information, if and when incontinence may occur. At first, the over-the-counter pull-up type incontinence underwear may be fine for a while.  When these products stop doing the job, it’s time to move on to the medical supply products that can be purchased online.  I have had great luck with two companies,  https://www.healthykin.com/ and  https://www.parentgiving.com/  These incontinence products have varying capacity levels. There are nighttime versions ..read more

Being a caregiver for a loved one suffering from Lewy Body Dementia (LBD) is a challenge. Caregivers expect a lot from themselves. (They often have no choice.) They are often hyper-focused on their loved one and are frequently tough on themselves. Perhaps one way to ease that self judgment is to realize that there is actual scientific evidence why we sometimes aren’t working at our optimal level. It’s called Decision Fatigue. The Journal of Health Psychology describes Decision Fatigue as what happens when “the limited reserve of stamina for decision making becomes drained.” The quote in this a ..read more

Click Here For English Version of This Page / Versión en inglés de esta página Foto cortesía deUnsplash under Creative Commons 0 license Hasta 1,4 millones de personas sufren demencia con cuerpos de Lewy Lewy Body Dementia en los Estados Unidos, pero esta enfermedad puede ser evasiva y difícil de diagnosticar. La demencia con cuerpos de Lewy (LBD) difiere de otros tipos de demencia progresiva, y sus síntomas también pueden simular otras enfermedades y trastornos. LBD es más común en adultos mayores de 50 años, por lo que es importante conocer los síntomas y observarlos a medida que usted o s ..read more