Find Senior Care (City or Zip)
Join Now Log In
M
mammacow Asked May 26, 2024

My husband has lewy body and is now unable to stand or walk.

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.

NYDaughterInLaw May 27, 2024
Your husband has one of the most aggressive forms of dementia. I would request a consult from a palliative care doctor and talk to them about hospice especially if his appetite is poor. Quality of life at the end of life is so very important.

NeedHelpWithMom May 27, 2024
Dementia affects everyone differently, just as Parkinson’s disease does.

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.

ADVERTISEMENT


Midkid58 May 27, 2024
I have a dear friend whose DH was dxed with LBD. At age 62--very young. He went steadily downhill. She retired a couple years early to care for him. About 6 months ago, he suddenly (like, overnight, to hear her tell of it) he went from being the sweet, loving man she'd known for 50 years to being aggressive, angry and lashing out. She had no choice but to place him. He spent 6 weeks in a NH and passed from pneumonia--but he was not walking nor talking the last couple of weeks.

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.

JoAnn29 May 27, 2024
What I found

"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."
AlvaDeer May 27, 2024
This is what my brother had, JoAnn. Balance and gait, much like Parkinson's, really a dreadful problem. They may become almost frozen with an inability to move out of fear of the balance. One in ALF care my brother moved out first into the grounds where he felt safe, later in the neighborhood, to walk so much more and it improved. Balance exercises improved him as well but he eventually became unwilling to do them with diligence. He died before he could progress to this.
funkygrandma59 May 27, 2024
Well sadly Lewy Body dementia is the second most aggressive of all the dementias with a life expectancy of just 5-7 years, and I can tell you that everyone that I've known who had Lewy Body dementia(and there have been at least 5)have all ended up completely bedridden in the last year of their lives, so this just sounds like the "normal" progression of this horrific disease.
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.

lmh1973 May 26, 2024
Hi mammacow. I’m very sorry your family is going through this. Dementia is such a devastating disease. My Mom lives with me and has vascular dementia. She had been using a walker with a lot of assistance for several years. One morning in April of 2023 she forgot how to stand up and hasn’t walked since. Like you said, the messages just don’t connect. I’m sending you many hugs and believe you will find the strength to get through this. I wish your family peace.
mammacow May 27, 2024
Thanks for caring, I'm having a bad day today and it feels good to know others care. Bles you
AlvaDeer May 26, 2024
Mama, I am so sorry that the progression is so very quick for your hubby. Please discuss with his doctor. Each patient--and my own Brother had Lewy's--is so individual as to the progression and how quick it is. Only the MD involved with your hubby's history and general status of health can give you even a clue as to all this, and often enough it is ONLY a clue.
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.
mammacow May 26, 2024
He last saw the neurologist on 5/1, they told me not to try to care for him at home, the hospital said the same thing. The doctor at the nursing home is just someone who comes whatever the state requires (I suppose if they had an emergency he'd come or he'd be sent to the hospital.) He isn't eligible for hospice. I have heard what you said about it being so individual from others. He is adamant that he wants to get better so he can do the things he's always done and I know that is probably impossible now, but don't know how to tell him that. It will devastate him, I'm stringing him along now but don't know how long that will work. His balance has been bad since late December, but it's worse now. He occasionally can help with standing up but not often. This just kills me to see him like this, This is so cruel for him, but my son and I are suffering too, of course he doesn't see our pain because his reality is only what he perceives. I hope for strength to go through this, we have been together since 15 years old and have a lot of history. Thanks for your info, I appreciate it.
mammacow May 26, 2024
I appreciate the input I have received. I'm afraid he won't be ever be able to walk. I know I can't care for him. He is anxious to be able to get up and walk, getting very discouraged with not being able to do anything. I'm thinking perhaps the disease is not allowing his brain to give the right signals to his body to tell the muscles to stand up and walk. The nurse in the transitional care told me she thought a lot of why he didn't progress better was that his brain couldn't communicate properly with the nerves to tell them to walk and if it did get through he didn't remember what he did the time before so he didn't progress.
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.
gemswinner12 May 26, 2024
So sorry you're experiencing this so quickly after a long life together and he's deteriorating right before your eyes. I know you said that earlier he did not qualify for hospice, but he very well may qualify now at this point. Evaluations are free and it is an extra layer of assistance for you and the facility. Do you believe he's ready for comfort measures? It's a very personal decision for you to make for your beloved. Please update us and let us know how you both are doing.
Beatty May 26, 2024
A serious fall.
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.

Anxietynacy May 26, 2024
I have no idea with your husband and his dementia, but I do know often with a fall or any kind of trauma they slip backwards mentally.

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!

Daughterof1930 May 26, 2024
I can’t relate to that specific dementia but definitely can relate to falls often being big game changers in the elderly. It’s incredible the impact that one fall can have in so many areas, and have consequences that are long lasting or permanent. I hope your husband will continue to receive good care and you will not try to care for him in your home. This is now past what most anyone could do in a home setting. I’m sorry it can’t be better and wish you both peace

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter