With the likelihood of heat waves on the rise, it is particularly important to be aware of the impact of extreme heat on people with Lewy body dementia (LBD). LBD on its own has a disruptive impact on the Autonomic Nervous system (the automatic part of our nervous system that regulates many of the body’s […]
Hot Summer Temperatures are a Particular Concern for Folks
One Soul
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 […]
Living with REM Sleep Behavior Disorder
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, […]
Struggling with Changes and Finding Support
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 […]
Coping with Hallucinations and Delusions – Part II
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 […]
Coping with Hallucinations and Delusions – Part I
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 […]
The Doctor Visit
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 […]
Incontinence with Dignity
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 […]
Decision Fatigue
“The Numbness you feel at
the end of an overloaded day.”
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 […]
Excellent Advice for Healthy Meals
Noting that tastes, likes and dislikes change and diminish appetites of many Lewy Body patients leaves the caregiver in a quandary. What should the goals be to slow the inevitable weight-loss, and how to do it while offering balanced meals? Over the past many months, I have noticed that my husband enjoys peanut-butter and jelly […]