My DH's neuro said that, based on my DH's decline and history (the neuro has been with us since 1/2006), my DH has 9 months. Is that really 9 months? My gut tells me no. I know that no one can know the timing, but I am feeling that 9 months is some kind of code and I don't have a decoder ring. Can anyone help me decode the message?
By the way, when I told the DR that his prognosis was consistent with what I have been feeling, he responded that his prognosis is not based on feeling. He's an older neuro, highly qualified, and experienced in dementia, including LBD.
Sharan, is your husband still able to feed and dress himself? Can he walk without assistance? Can he still talk and carry on a conversation? These will be factors in determining approximately how much longer he has.
My husband can barely lift a fork to his mouth, needs assistance dressing and walking; and can't talk and doesn't understand conversation - he can follow a couple of words of instruction ("lift your arm" or "let me have the cup"). I now have to shower and shampoo him. And they won't put a timetable on how long he has. Some say he could be this way for a couple of years. I doubt if he will last another year. His AD was diagnosed in Feb 2007, so you can see how fast a decline he has had.
I don't think anyone knows how long any of them will live. We just have to make certain we have all of our financial and legal documents in place and everything done that we can, then take care of them or see that they are taken care of to the best of our abililty, and try to have a few days every so often to ourselves, or at least a few hours a couple of times a week in order to reenergize ourselves.
Some have gone down overnight; some over a week; some over a month; some over 3 years from being bedridden. We really have no way of knowing. Each case of AD is different.
We all think we would like to know when it will be over.
What stage is your DH in? My DH is also suspected of having Lewy Body Dementia and his decline over the past 3 years and especially the past year has been rapid to say the least. He was driving until about a year and a half ago, could walk, talk, etc.
He walked into the NH in Nov of last year. Not long after, he lost the ability to walk. Now he can't speak coherently, can't feed himself, is on a pureed diet, and recently started having problems swallowing.
I worry at this rate that he won't last the Winter, although his neurologist said he could go on for 5 years. I really doubt that.
The most accurate estimate you can get is to visit the local county fair, and pay $1.00 to the guesser who can guess your age, weight, and anything else. He can give you an accurate estimate, and if he is wrong, at least you get a stuffed animal....
Phranque....you have the best sense of humor....I really appreciate it! We'd get along SWELL! You really are able to lighten up my burdens at times with your remarks!! (((Jen))) ....and, can I choose the stuffed pony?
Sharan....I really don't have an answer for you, though I know my grandmother lasted for YEARS after she was placed in a NH , lost her ability to communicate with the world, walk, etc. I have wondered the same thing....everyone is different that I've spoken to.
I believe it is the Cancer Centers of America commercials that mention "No Expiration Date Is Stamped On The Bottom Of His Foot"...... Absolutely! In 2004, one of DH's doctors asked if I wanted him to call Hospice. He had a blood disorder. Since AD, no mention has been made of the blood disorder whatsoever! Go figure!. My sister in law died of complications of Alzheimer's Disease. She could not see, could not swallow, was bedbound in a fetal position for over a year. THAT is terminal. But, if you notice, she was like that for over a YEAR!!!... with a feeding tube. My D-BIL could not let her go. Finally, her brain was so far gone, she could no longer breathe on her own. Everyone talked about how loving and caring he was with her. (He kept her home the entire time.) I wonder if (when she was well) she realized how much he loved her. It was just oooooo sad.
I hear what you are saying and know that no one can know what to expect. I do know that there are important differences between LBD and the other dementias, including AD and FTD, and based on age (younger progresses faster and my DH is only 51).
From all of the research I have done and from my discussions with various doctors, my DH has a unique variant of LBD that is highly focused on his autonomic (automatic) functions. Although he can still feed and bathe himself and can engage in limited real time discussions (sometimes with insights that are surprising), his body is shutting down. His blood pressure and pulse are not stable and do not react consistently to stimulation (an autonomic dysfunction), his whole body is swollen from edema with more swelling on the left side than the right (another autonomic dysfunction), his digestive system is slowing down so much that Miralax 2x daily with stool softeners 2x daily are not enough to stimulate a BM (yet another autonomic dysfunction), his urinary system is also slowing down (it takes him 15-30 minutes to pee if he can pee at all), and, perhaps most importantly, his body is forgetting to breath (he has Central Sleep Apnea (where the signals telling his brain he needs oxygen are not getting the message) to the point that he is having 30 apnea events per hour (yes, another autonomic dysfunction), his hallucinations are increasing sharply despite him being on 900 mg of Seroquel XR, and he actively talks and moves in his sleep both at night and while "sleep watching" (mostly sleeping while the TV is on).
My DH's days are spent mostly sleeping with 2-4 hours of "active" time (often, "active" means he is watching the TV and following the story ... at least on the surface). There are often days when he sleeps and sleep watches for all but 1 hour and a rare day where he is "active" for 6 hours.
Also, my DH made it very clear both over the years and in his Advance Directive that he does not want ANY tubes, machines, etc. My neurologist has seen many patients (he is in his 60s) with dementia and seems very confident that my DH has 9 months.
My husband has LBD but it is progressing slowly so far (we are not quite a year and a half from diagnosis). It does sound like the autonomic disfunction that is so prominent for your DH could lead more quickly to a fatal complication. Have you thought about whether at some point you would not give antibiotics for pneumonia or a urinary tract infection?
>>>his body is forgetting to breath (he has Central Sleep Apnea (where the signals telling his brain he needs oxygen are not getting the message) to the point that he is having 30 apnea events per hour>>>>>
Sharan - is this while asleep or all the time? We received the results of Art's sleep study and he averaged 27 episodes an hour. Now I know why they sent it home with him that day.
LBD involves Parkinson's symptoms (slowness, rigidity, sometime tremor) and more loss of executive function than memory compared to Alzheimers. Hallucinations are also a more prominent feature, though not everyone with LBD has them.
As for the differences between LBD and AD, there are several that I have gathered:
1. The mechanism is different: LBD's mechanism seems to be a mutated gene that causes the proteins to fold improperly and to collect partial pieces of proteins that are on their way out of the brain. The way I think about is that the proteins form globs kinda like clots in the arteries. AD's mechanism seems to be related to the blood-brain barrier, which involves ACH activities. I am not a biologist, but somehow oxygen is converted to ACH and that provides the oxygen to the brain. Aricept performs as a substitute for transmitting the needed ACH to the cells.
2. The REM sleep disorder (moving and talking while in REM sleep) is a major indicator of LBD. Instead of being in a semi-paralyzed state during REM, LBD patients act out their dreams moving their arms and legs and even speaking out load. Now, almost everyone has, at one time or another, moved in their sleep or woken up talking. This is different. My DH moves constantly while he sleeps. If he's walking in his sleep, his feet are moving; kicking, his leg will make a kicking motion; boxing, his arms will be in the air punching around.
3. More prominent executive dysfunction (even simple decision making becomes impossible).
4. Autonomic dysfunction - think of all the things your body does automatically. The LBD attacks the system of signaling between the brain and the body, resulting in so many things like hearing something when no one said anything, not being able to understand the words because the signal is garbled or sent to the wrong place, not being able to process light and images and loss of motor control over the eyes resulting in development of a lazy eye; digestive and urinary dysfunction (my DH's is slowing, but I suppose it could speed up); and so many more.
5. Audio and Visual Hallucinations are more prominent.
6. Greater deviation between the highs and lows on any given day. going from being "not there" to being able to carry on a fairly normal discussion for a short period of time)
By the way, FTD also involves protein folding improperly but it focuses on the frontal and/or temperal lobe whereas LBD focuses on the mid brain. FTD and LBD look a lot alike from a symptomatic point of view. For example, both involve executive dysfunction, movement disorders, memory loss, change of personality (some to aggressive, others to apathy), and hallucinations. A patient can have LBD that affects other parts of the brain while impacting REM and autonomic functions, which leads to a significant variation in life expectancy. If you research the mid-brain activities, you will see that it is the primary signaling part of the brain. From what I can tell, it looks like the memory (most often the primary focus of AD) and the executive function may be mostly in tact with my DH, but they are not getting the signals from the mid-brain that enable them to perform their functions. For example, my DH and I have celebrated the anniversary of the day he proposed for 27 of the last 29 years. In the last 2 years, he cannot remember and I cannot bear to remind him. Even so, there are times when he can readily talk about that night and others that he cannot remember it at all. I know this is true to some extent for all dementias, but when my DH remembers something that he didn't remember the day or week before, he remembers it with a high degree of clarity and detail. An MRI will show shrinkage of the frontal or temporal lobe if the patient has FTD.
My husband, age 71, was diagnosed with LBD with 3 previous years of Cognitive Impairment (although I believe it began much sooner than that). He has trouble communicating any more. It is mostly babble thinking he is saying the right words, but it comes out as gibberish. It is very frustrating for him and me as well. He often becomes depressed and cries out of the blue. He talks and asks questions all day, often forgetting my name, and just recently his own name. He often asks me questions such as "Am I married? Where did I work or go to school, etc. When I tell him I am his wife, he is shocked and says "No way". I can't figure out who he thinks I am. He can not remember his son or grandchildren's names, his phone number etc.He cannot work the shower, microwave, the tv remote and so on and so on.
The difference with my husband is that he has been a triathlete and even completed 3 Ironman competitions and was extreme in his workouts. Of course, now, he can not ride, run or swim. He has very low blood pressure and pulse and in excellent health. I fear his mind will be completely gone long before his body (or mine) gives out. It seems to me that is a long road ahead and not an easy one.
photoartc - sorry to hear about your husband. As for who you are, if telling him you are his wife and it upsets him, tell him you are his caregiver. That is probably who he thinks you are - some nice lady that takes care of him. My husband is not to that place but others that have say that is what their spouse thinks.
Charlotte...thank you for responding. Actually, he is happy when I tell him I am his wife....but then his mind goes to sex. Maybe it's better if I tell him I am the caregiver lol. We have been married for 48 years, by the way.
Hi photoartc and welcome to the website. My husband has young-onset AD and is also in excellent physical condition (before dx he worked out every day). He is 69 and the only non-AD related med he takes is a blood pressure pill. Personally, I think this journey is "easier" if there are no concurrent medical issues to deal with. Because let me tell you, when any discomfort/pain strikes a dementia patient (even something as minor as a common cold) they go way downhill, fast. Also, the fact that they can't really communicate complicates things. When Steve had a toothache last winter, he started banging his head on the wall in response--that was his form of dealing with it vs. being able to tell someone. Of course, all dementias are terminal and eventually, even those in the best physical condition succumb to it.
I hear most caregivers noting that their LOs can handle pain less well (certainly true with my wife). Pain will often make dementia symptoms worse, which is why you need to check for a UTI if there is a sudden downturn. But as the brain degenerates some people lose the ability to sense pain.