Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.
It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.
I have Lewy Body Dementia (LBD). Please . . .
Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.Continue reading →
Are you taking care of a loved one with memory loss? If so, are you taking care of you? Learning to care for yourself is one of the greatest challenges in caregiving. Here are a few statistics that speak to the importance and difficulty of caring for you, the caregiver:
Caring for people with dementia is reported to impact a person’s immune system for up to 3 years after their caregiving experience ends, thus increasing their chances of developing a chronic illness themselves [The National Alliance for Caregiving and AARP (2009)].
16% of caregivers working full time have a Physical Health Index (PHI) score of 77.4%, which is significantly lower than 83.0% for noncaregivers (Gallup Healthways Wellbeing Survey).
So what do you do? Feelings of guilt, shame and worry may be familiar to the burned-out caregiver, but they are not healthy or successful motivators for positive change and self-care. Mindfulness offers a kinder, more effective path. Continue reading →
“A partner paradigm strengthens our interconnectedness and can bring more awareness to the kindness and support that is right under our nose.”
When do you realize you are a family caregiver? Responses in my experience range from the darkly humorous to the completely visceral, such as: “When my husband started calling me ‘mom.’” Emerging caregivers are often not new to caregiving at all, but rather isolated from the pack. This delays significant steps toward caregiver support and activities that contribute to well-being and caregiver identity, such as joining groups for information, support, stress reduction or counseling. There may also be significant resistance to the word “caregiver” and associated activities. It can feel one-sided and lonely; a loaded word fraught with fear, judgment from friends and comparisons to other family members who may have carried this title in the past.
Emerging as a caregiver can be an uncomfortable and vulnerable time, a trust free-fall. A sense of loss and disappointment is completely natural. Continue reading →
One day last year, I walked into clinic to see a patient with end-stage liver disease. His health had been declining, with frequent admissions to the hospital for confusion and fluid overload. The patient was in the bathroom when I entered the room, so I stopped to ask his wife how things were going. She dutifully started listing his current medications, described his recent symptoms, and showed me a list of his daily weights. Something about the frantic way she did this, made me stop and ask: “No, how are YOU doing?” Then she started to cry. Continue reading →
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