Sitting with other caregivers at our monthly LBD Caregivers’ Support Group, I’m always struck by how stressful one aspect of LBD can be for us caregivers. That is the inconsistency, fluctuations and wide variety of the many LBD symptoms. There is a sense among us that we wake up each morning never knowing what we may encounter. This distinctive feature of LBD heightens caregiver stress.
As in Parkinson’s Disease, Lewy Body Dementia affects the entire Autonomic Nervous System (ANS). And yet, people often only focus on the word “dementia” and are blindsided by all other possible symptoms that can be caused by a disruption of the ANS. It is useful for caregivers to learn what that actually means; an explanation that is too often missing during a neurological consultation.
A quick overview of what the ANS controls sheds some light on how pervasive the LBD symptoms can be and why no two people with this illness are alike. The ANS controls all the things our bodies do largely unconsciously. This includes respiration, heart rate, blood pressure, digestion, body temperature, urination and defecation, monitoring blood sugar, oxygen levels, salivation and sweat glands, to name just a few. It is much more complex than this list can convey, but even knowing this can help caregivers regulate their own stress levels. Otherwise, I have seen caregivers, and experienced myself, feeling overwhelmed or panicky over the sudden appearance of a seemingly new symptom.
Knowing that symptoms come and go is important. Knowing that the sudden onset of a “new” symptom (such as constipation, or low blood pressure or bouts of feeling very hot or cold) is an effect of a disrupted ANS can allow the caregiver time and space to take a deep breath, to step back and to not panic. This then can lead her to calm explanations when talking to the person with Lewy. When, after a short walk around the block, my husband asks anxiously, “why am I SO hot?” Before I understood the ANS, I might have felt frightened or worried that he was getting a fever. Now, while I still check for fever, I calmly say, “it’s Lewy, honey. Nothing to worry about. You’ll feel better soon.” And he does.
The Lewy Body Dementia Resource Center offers a variety of information on symptoms, diagnoses, treatment, and management of Lewy Body Dementia. Our goal is to help relieve some of the burden that caregivers carry, offering resources that aid in coping with this disease. Our helpline is available 12 hours a day, 7 days a week, so give us a call for support and more information on Lewy Body Dementia: 516-218-2026
thank you Pamela..going through another tough week with lots of “unknows” and this has told me that most of them are LBD related..
Well written article, Pamela! Thank you for sharing your own experiences.
As a caregiver of my partner with LBD I noticed similar behaviors caused by a malfunctioning ANS. These behaviors I can not do anything about.
However, I can do something about the way I react to these behaviors. My partner is not helped when I show how flustered and anxious I might be about her state of mind and body.
Instead, I decided that it would be beneficial for my partner when I show involvement, love and concern and act practically; e.g. give physical support when she threatens to lose her balance, give her liquid food when she can’t chew anymore, give her as much water to drink knowing from a number of experiences that a bladder infection causes a delirium that badly influences her body and mind.
For some it might not be easy to act in an involved, loving and practical way while keeping emotions at bay.
Important is to know that we have a choice in how we (re)act to persons we give care to.
Thank you Hian Oey. You are so in tune that showing love and concern helps immensely. It certainly isn’t always easy but goes a long way when we are able. Thank you for writing.
Thank you , I need support as I feel o erwhelm. My spouse has delusions and at times he is unsafe , so much work I need some guide lines
Hi Barb – Please know you can call our Helpline seven days a week at 833-LBD-LINE and we can direct you to caregiver support groups as well.