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Alzheimer`s Disease/need ur help about my dad situation ...


Hello marry , first of all I wana thank u in advance .
Since 3 yrs ago I took my dad to the dr and after tests the dr told us that dad has alzheimer disease and he start givin him exelon 1.5 mg twice per day and after some monthes I decided to ask another dr about my dad and he told me the its not alzheimer its dlb ( lewy body dimentia) and he kept the same medcations but we start exelon 3 mg twice per day and dad stay stable not getting better and not even worse be he was able to drive talk eat take a shower and all what he needs alone but the prob was that he forget where he put his own things and start having some troubles in calculation and money things and since 6 monthes start hallucination ...and now he's stuck in bad unable to eat or talk or move we feed him with a tube in his stomach. He now talk sinemet . Depakine chrono . And exelon 10 patch are these the best med ? And I hope I can send u the results and tests to better know about my dad situation if its really dlb or there is something elese also ...

Hi Paul,

It does sound like Lewy Body dementia - vivid hallucinations are on of the hallmarks of that disease. It is often hard to diagnosed in the early phases if the person does not have the Parkinson's like symptoms that can go with it yet. As you know, it is a relentlessly progressive illness and it is fatal. It also usually progresses more rapidly than Alzheimer's. Typically a person with it survives 5-7 years - and your father probably had this brewing a couple of years before he was formally diagnosed, so he's probably at least 4 or 5 years into it. Keep in mind that it is also possible to have more than one kind of dementia going on at the same time - some people have Alzheimer's and Lewy Body and even vascular dementias at the same time. The real reason it is important to know if it's Lewy Body is so antipsychotic medications and tranquilizers like Haldol can be avoided, as they have very serious and damaging effects on people with DLB. It's very hard to diagnose as there can be all kinds of overlapping symptoms common to a number of progressive dementias.  It's not uncommon - on autopsy, 10-15% of people with dementia turn out to have Lewy Body features.

I know you know that Lewy Body also displays some extreme fluctuations, and can even plateau for a while, which can give you hope the person might recover or have been misdiagnosed, but these features are actually part of the illness.

Here is some basic information you have probably seen versions of before

It sounds like he is nearing the final stage of the illness. There is no medication that is going to reverse this or really help. The sinemet is for the Parkinson's like movement issues, but at this point, I doubt it will do much, and it does cause problems in some Lewy Body patients (such as increasing hallucinations). However, worth a try.

I take it the depakote is for agitation? Perhaps related to the feeding tube? How much discussion went on before the feeding tube was placed? As you probably know, there is no evidence that feeding tubes extend life, and they do cause a lot of discomfort and distress for the person who has them.

Sounds like he is getting reasonable care. However, you should and your family need to have a very frank talk with the doctors about what your future goals are for his treatment. He may fluctuate slightly, but the overall road is one way down hill.  What are you hoping to achieve for him in terms of medical interventions and treatment? Many people at this stage will decide to keep him as comfortable and happy as possible, and opt for palliative care only, such as is offered by hospice. In other words, quality of life starts to take precedence over quantity. If he developed another illness, how aggressively would you treat it? Would you want him taken to hospital and given a lot of tests and procedures and treatments that might be scary and painful but not extend his life?  Obviously, you don't want him to be in any pain or distress, but if he got cancer or heart problems or pneumonia, what would you want done for him? Is there a point to every medication he is taking?

You really do need to discuss this as a family, with the doctors and with your religious counsel if you are members of a faith community. What does the doctors think about your father's expected life span? What would they do if it was their family member? Once a person is bedridden and unable to eat, with or without tubes, their life is limited. My guess is perhaps less than a year. Do you know what he wanted for himself when he got to this point? Would he have wanted aggressive measures and interventions to keep him alive if his quality of life was very poor and there was no hope of meaningful recovery?

I know this is very upsetting for everyone involved. You love your father and are dismayed and distressed by what has happened to him. You want the best possible care for him. You know him and his circumstances better than anyone. It's time to really think about what is the kindest and most loving thing to do for him in the bigger picture. Only you and the family can make these decisions.

My family was very lucky in that we knew what my mother in law wanted. She had a "living will" and had been very clear that she did not want extraordinary measures to keep her going once she was advanced in her dementia. She got very good and compassionate care, and lived almost two years after she lost the ability to walk and talk, but she had no other health concerns to complicate her situation. Earlier, she had been haunted by her own mother's fate - her mother had lingered some time after a devastating stroke, so my mother in law did not want aggressive measures to keep her going if she ended up in that kind of condition, and we were guided by her wishes. She was carefully hand fed, and we were very conscious of doing what we could to make sure she had the best possible quality of life possible in the circumstances.
Basically, she spent the last months of her life propped in bed, incontinent, sleeping all the time, and really unaware of where she was or who she was with. This was not life.

It is emotionally difficult, since you would do anything to be able to restore the person to health. I wish I could tell you there was some medication or therapy that would bring your father back from the edge, and restore his physical and mental health. He is very fortunate to have loving family concerned about his well being and looking out for his best interests.

I wish I had better news for you. Thinking of you and yours.  

Alzheimer`s Disease

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Mary Gordon


Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.


Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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