For the past 5 years my older brother has been experiencing baffling symptoms, beginning with random falls while he was at work (he was a chef) then weakened knees he found it difficult to step up even shallow steps. We have not yet found out what the problem is. He has had several tests and scans He is now wheel chair bound but refuses to do anything for himself preferring to depend on the family for care.
He has cursed out and fired at least 6 caregivers including accusing one of them of stealing from him. He was aggressive to the point of violence with me but i managed to evade him. In the last 6months his speech has become slurred and sometimes unintelligible, but yet doctors say they dont see whats wrong.
I am beginning to think its early onset Alzheimers he is now 62.
NB. Our mom has dementia
Yes, some types of dementia are hereditary, but this doesn't sound like that.
Google: (below and this one:
https://www.alz.org/help-support/caregiving/stages-behaviors/agression-anger_
These is a huge amount of information available. You need a local MD to assist in making the changes needed. Even try Hospice for help. A person doesn't need to be terminal to get services although they do need to be diagnosed.
Google:
dementia and depression)
Anger, dementia, depression
Is it depression or is it anger?
If I were you, I'd get your brother another MD ASAP.
If a situation requires YOU (or anyone) to '... I managed to evade him' due to aggressive violence, it is time that he be placed in a facility.
- He likely won't change his feelings/reactions to caregivers (although medication may help). Ask his MD about this ASAP.
* Cognitively, with brain changes, he may be unable to manage his emotions / anger / behavior.
* You do not want to wait until he assaults one of them. In addition to injuring a person (and this could be YOU), this is a lawsuit you do not want.
Yes, He will RELY on the family / you until the family / you decide to stop.
Why would he think otherwise? And, he may NOT be able to cognitively understand what is happening with his care / responsibilities on the family.
He is 'just there' accepting the support and 'help' because he needs it ... and is used to the family being there doing the hard, essential work to care for him.
* In other words, what else is he going to do?
* His cognitive functioning appears to be compromised?
* He cannot handle his anger / outbursts / violent behavior.
VIDEO TAPE HIM WHEN HE IS ACTIVATED / exhibiting angry outbursts and violent intentions / behavior towards others. This could be very helpful in medication assessment and/or facility placement.
The question is, why are you waiting to make obvious needed changes - for his well being and yours/the family?
Do you want to wait until something 'more serious' happens due to his anger / aggressive behavior?
You need professional support to make needed care (medical assessment, MD provider, housing) changes.
* At this point, it doesn't matter what he wants. You do what is in his best interest, and that of the family).
Perhaps APS (Adult Protective Services) might be able to guide you or give you some input. He needs to be in a situation where others will be protected, and he needs to be protected from injuring himself. This isn't the role of APS although they may be able to lead you to a resource that is more appropriately / helpful.
Gena / Touch Matters
Best wishes to you
Your brother is exceptionally young, and this sounds physical to me unless the mental changes came at the exact same time. If this doctor cannot figure out what is happening, cannot find an answer, cannot make referrals to good neuro consult then you need another doctor for your brother.
I am so sorry to hear this for you but you need answers. It is terrible to have this amount of deterioration this suddenly without any answer at all.
To address your question re heredity, some mental illness and some dementias are more "tending to run in families" than they are "inherited". You should discuss, if you ever have a diagnosis, with your MD.
Not sure what physicians he is seeing, but a full work up with a board certified geriatric internist, neurologist, and geriatric psychiatrist may be in order. This may entail a variety of tests (brain imaging, an extensive psychological assessment (not the just ask them what day it is and who is the President), and various chems/blood exams, etc.). And it make take some time.
Proper diagnosis is a bit of a ruling out this or that. If brain imaging clearly shows a tumor/cancer, water on the brain/hydrocephalus, or a frontal lob/dementia issue; then perhaps a diagnosis can be made and the course of treatment can defined. If lumbar puncture shows nothing, it may not be MS. Etc.
I have had two friends go through a long road to a clear diagnosis with mental and physical decline. One was mid 50s and after many tests, she was diagnosed as having early onset Alzheimers (AZ). It was awful, she could not walk, talk or remember much of anything. But it turned out NOT to be AZ. It took a very adept neurologist at preeminent teaching hospital she was referred to, to make the correct diagnosis that none others had thought of. My friend grew up in England where the beef is NOT regulated like here in the US. It turned out she had "mad cow" disease. She passed a few years later, there is no treatment or cure for this. Sad. https://www.hopkinsmedicine.org/health/conditions-and-diseases/bse-mad-cow-disease-and-vcjd#:~:text=Mad%20cow%20disease%2C%20or%20bovine,diseases%20caused%20by%20a%20prion.
Another friend (73) was in physical and mental decline; kept falling, could not read, hard to speak, severe cognitive decline. Given Parkinson's is common in her family, she assumed it was that. IT WAS NOT. It was "water on the brain/hydrocephalus. She had surgery to install a drain system from her brain into her abdomen to reduce the excess brain fluids her body was creating (why, who knows) and it is like a miracle. She is back to her old self, fully cognitive, drives a car again. But she initially did not want to go see any physician, resigned that she too got the "family Parkinson's affliction." Thank God her family insisted she go see specialists to get a proper diagnosis. Left unaddressed the "water on the brain" would have killed her, but now she has a new leaf on life.
Two different stories, two different outcomes. It can all be so terrifying and depressing. I hope you can help your LO go get with the right specialists to work on a diagnosis and perhaps a treatment plan that will improve or perhaps turn things around. But if there is no treatment, then at least all will know what to expect, what you/your LO is dealing with and if others in the family should be aware if there is a genetic/family issue here.
Best of luck, hope you can find answers and hope you can also take care of yourself as you go through this.
My mother’s side doesn’t live so long.
Dementia, IMO, is not hereditary. Most of them are lifestyle. Smoke too much, drink too much, Cholesterol meds are suppose to contribute to Dementia. So is hormone therapy, which my Mom had both. Her siblings died at 53, 60 and 79. So have no idea if they had Dementia. My Aunt had a brain injury in her 50s. At 79 she was not showing any signs of Dementia yet. Moms started about 80. Just little things.
Alzheimers falls under the Dementia umbrella but effects the brain differently. This is hereditary. It runs in my Dads family. Out of 8 kids 3 lived passed 80, 2 had ALZ. The others did not live long enough so not sure if they would have gotten ALZ. My grandmother had it as did her sister and sisters daughter.
I don't think ur brother has a Dementia. It may just be frustration not knowing what is wrong with him. Dementia may be a product of his problem but did not cause it.
There are multiple reasons for some of the behaviors you’re describing, and he may be “refusing” / “preferring” but he also may be losing his ability to make decisions about what he does.
His BEHAVIOR needs to be analyzed by a trained behavioral geriatric specialist, and you as family need to be looking for caregivers who are able to ignore his rants and threats, and hired with the understanding that FAMILY will be responsible for hiring/firing, NOT the patient himself.
Be sure to maintain a healthy and pleasant lifestyle for yourself as you move forward with your caregiving. His needs are dramatic, but you as “family” must honor your needs too.
—Also check what medicines he’s taking. They may be causing problems, side-effects.
—The doctors would have given a diagnosis. They never just say “I don’t know”. When they don’t know, they responsibly refer you to someone else who might know.
https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022
Has he seen a neurologist? Have you spoken to the doctors who say the don't see what's wrong? How did you get this information?
Certain dementias can be inherited, but you are not "guaranteed" to get it unless you actually inherit the gene for it.
FYI just because your brother doesn't want non-family caregivers, family isn't obligated to do it, especially if he's violent.