He was taken directly from the transitional care of the hospital to the nursing which is also providing physical 5 days a week. He is not getting better, if anything he is getting worse. Does anyone know what is causing this. He was beginning to have difficulty at home prior to a serious fall which occurred while out with friends. He was transported to the hospital & ended up in the nursing home. He has had 2 bad falls since the first of the year and his confusion, delusions & hallucinations have gotten much worse. He's a fairly good place right now, I'm waiting for things to get ugly, they always last much longer than the good times. Any ideas about what might be causing his difficulty with standing & walking. Thanks ahead of time for any help anyone might have.
My mother had Parkinson’s disease. She had mild dementia.
There were mobility issues due to having Parkinson’s disease. The way Mom described it, was that her brain sent the signals to move, but her body had difficulty following the signals. Neurological disorders are challenging.
Mom did home health with an occupational and physical therapist which helped tremendously.
One thing that the occupational therapist did was, she arranged the furniture so that Mom could get around easier. Mom regularly did exercises to help her with strength and balance.
In spite of all of the exercises, Mom took a few tumbles, which resulted in doing rehab at a facility.
My mom worked extremely hard in home health and rehab, even in her 90’s, and was able to avoid ever being in a wheelchair. She did use a walker.
A friend of mine cared for her younger sister who had Down’s syndrome. When her sister developed dementia she refused to walk.
The hospice nurse told my friend that she was still physically able to walk but that she was refusing to walk due to her dementia.
Everyone who has dementia will respond individually to their dementia. It isn’t a clear cut, black and white situation.
In his situation, he didn't have 'downward turns' and then come back to any kind of baseline. LBD is horribly aggressive.
My friend is grieving so fiercely, it hurts to see her. But she knew the odds. And she didn't try to be a hero and keep him home.
I'm so sorry for you.
"Lewy body dementia (LBD) is a brain disorder that occurs when abnormal protein clumps called Lewy bodies build up in the brain and affect chemicals that control brain functions. These clumps can damage certain parts of the brain, which can lead to a decline in abilities controlled by those regions. LBD can affect many different brain regions, including:
Cerebral cortex: Controls many functions, including thought, language, perception, and information processing
Limbic cortex: Plays a major role in emotions and behavior
Hippocampus: Essential for forming new memories
Midbrain and basal ganglia: Involved in movement
Brain stem: Regulates sleep and maintains alertness
Olfactory pathways: Important for recognizing smells
National Institute of Neurological Disorders and Stroke
Lewy Body Dementia | National Institute of Neurological Disorders and StrokeJan 19, 2024 — The result is widespread damage to certain parts of the brain and a decline in abilities controlled by the affected by those brain regions. In LBD, Lewy bodies affect several different brain regions : Cerebral cortex, which controls many functions, including information processing, perception, thought, and language. Limbic cortex, which plays a major role in emotions and behavior. Hippocampus, which is essential to forming new memories. Midbrain and basal ganglia, which are involved in movement. Brain stem, which is important in regulating sleep and maintaining alertness. Olfactory pathways, which are important in recognizing smells.
National Institute on Aging
What Is Lewy Body Dementia? Causes, Symptoms, and TreatmentsJul 29, 2021 — Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood.
Alzheimers.gov
What Is Lewy Body Dementia?
LBD can also affect the autonomic nervous system, which controls automatic functions like heart rate, blood pressure, sweating, and digestion. This can lead to symptoms like sudden drops in blood pressure when standing, dizziness, falls, loss of bladder control, and bowel issues.
LBD can cause a variety of symptoms, including:
Thinking problems, such as trouble with attention, planning, multitasking, problem-solving, and reasoning
Memory problems
Visual hallucinations
Unpredictable changes in attention and alertness
Slow movement
Difficulty walking
Muscle stiffness
Sleep disturbances, including sleepiness during the day
Fainting, unsteadiness, and falls
LBD can also cause neuropsychiatric features like delusions, anxiety, apathy, and depression.
Unlike Alzheimer's disease, which tends to progress gradually, LBD often starts rapidly, with a fast decline in the first few months. Patients with LBD can typically survive for five to seven years after diagnosis."
I'm sorry you're having to go through this, but I'm glad at least he's now in nursing care so you can just be his loving wife and advocate and not his overwhelmed caregiver.
Just enjoy whatever time you may have left with him.
The balance is the worst of it often in Lewy's. For my brother his balance problems had been long coming, but at a certain point became much worse in a short period of time. Stairs became often an impossibility even with a handrail. He died of sepsis before his Lewy's could do it's worst in getting the best of him. In all truth I am eternally grateful now for that fact. My own doctor's Dad had Lewy's and the progression for so many is so very tough to see.
Such a horrible thing to happen to anyone and so frightening for me to see him deteriorating a such a rapid rate. I understand lewy body has level periods followed by declining abilities but in 5 months he has gone downhill so quickly. He is cared for but its not home. I don't know if he would know he was home if he came home. Anyone else with ideas, I'm open to all information.
Pain.
Delerium.
Dementia.
Any of these factors on their own can prevent/restrict walking.
If adding together, it may be just too hard for him.
Wait & see how the weeks go.
Be hopeful, but realistic.
Years ago I did caregiving for this lady, one of the girls accidentally shut her finger in the trunk, she had to get stitches. She was never the same after that. I had to stop going because she was to large for me and I was worried about falls.
My mom recently had horrible back pain, from degenerative back. She isn't the same as before.
I'm so darn sorry, this is so hard!