My Mom was diagnosed with Parkinson's 8 yrs ago and has already progressed to being diagnosed with dementia. How does this happen so fast?

There's man in my mother's NH who is unable to speak or stand and has no motor skills. He was diagnosed with parkinsons two years ago. Parkinsons is so weird.

Eight years in the life of a senior is a long time. Both Parkinson's and dementia are progressive diseases. I would expect both to make profound advances in eight years...in some moreso than in others.

The first sign of parkinsons in my mother's case was 16 years ago when I noticed her "pill rolling" on one hand - twirling thumb and forefinger as if rolling a pill. It never occurred to me it could be more than just aging. She'd had a major stroke the year before from which she completely recovered. She's had a number of strokes since and has broken both hips.

She lived alone 200km away, did for herself and her little dog and to all outward appearances was doing quite well. I'd visit maybe once a month so she was able to hide her condition. There was one time she missed a line of parked cars by a hair so she got rid of her van and bought a small car which she was forever backing out over the lawn. On one occasion she was hauled out of the bath tub by EMS. Goodness knows what else happened I never knew about. In retrospect those should have been red flags but she was in denial, telling stories and lying through her back teeth to get her own way and cover things up..

I moved to care for her, purely out of duty, in 2009 and found out she'd had dementia for a number of years and just how bad things were. A narcissist, she'd been "Mommie Dearest" for as long as I can remember and I originally thought her paranoia and increasing nastiness were just the result of aging.

I don't know what stage she's at now as it seems everyone is different. She's 88, in a nursing home the past 18 months, mostly in bed asleep, can't sit up or stand unaided, can barely speak and eats next to nothing.. Very occasionally she has a good day but then she's off again, raving about getting another house with live in staff, going to a NH that is "better" (where she is is lovely, the staff wonderful and so caring) and she beats me over the head to make it all happen for her yesterday.

She's probably forgotten all about it the next day or she may carry on demanding, ranting and raving for days/weeks. It unhinges me and, needless to say, I don't visit for a while. I don't know where we're at or how long she may have. I just hope she can find the happiness in the next life she could never find in this one.

Contact your local Area Agency on Aging or Bureau of Senior Services for caregiver support and information. Speak with your mother's physician, ask about the pro's and con's of the medication(s), have a list of questions ready so you can ask her doc. I find that the clarity and amount of confusion can vary from day to day. I have found that some are good at hiding or disguising symptoms that we really don't notice the confusion until one day and there it is larger than life. There are programs that provide in home assistance and respite, the Area Agency on Aging can give you information of these programs.

Emmie45: Blessings to what you are going through. I am a professional caregiver, and asked a different question the other day and JessieBelle Gets all the credit for this not be as she answered it, I asked what was the clinical answer about Parkinson's disease, depression and severe anxiety? I learned a lot, and am still reaching out for info, but this is what JESSIEBELLE STATED:

This is a very complicated question about possible neurological pathways and neurochemical imbalances in the brain. Anxiety and depression are linked very strongly and often respond well to the same medications. The most popular neurochemical talked about is serotonin, though others are also involved. There are pathways in the brain that are studied. You may find some of the more in depth studies interesting.
PD is linked less strongly to the other two, so a person with PD can still live a good life despite the problems that go along with the disease. I would not be surprised, however, if people with PD may have damage in some of the other areas of the brain, such as what we see with Lewey Body dementia. I also wouldn't be surprised if the losses that go along with advancing PD can themselves cause anxiety and depression.
From what I've read about Robin Williams, he has suffered from depression for a long time. It made me wonder if he had a problem too many people suffer from -- not being able to feel happy. I knew a teenage boy who was so handsome and always trying to make others happy who had the problem. He said he never could be happy, no matter how he tried. He finally hung himself, because his life was so painful to him. It was a tragedy that probably happened because his brain was not geared to letting him feel pleasure or happiness. And I wonder if many comedians suffer from this -- always trying to act to make others happy, but never feeling it themselves.
We never appreciate what our brains do for us until there is a problem. Not being able to feel happy to me seems like it would be the worst one. COURTESY OF JESSIEBELLE

I know Emmie that that doesn't answer exactly your question, but I thought would assist.

What I wanted to answer about the 8 or 9 years being fast. Unfortunately with all of the Alzheimer's, Parkinson's, Dementia, we are learning as fast as they are printing all the information. That is very hard and I can only know, because my mother is 87 and is in the last stages of Alzehimer's Disease, and she went for a long time at one stage, and then advanced overnight, so there isn't any clear amount of years on anything.

Have you had consultation with one Neurologist or 2. I would just get a second opinion. Regarding the medications, it is so individual, and each doctor has different ways of doing things, but I realize that is as easy as walking in mud a mile, but very worth it, if it allows your mother to be on the correct medications, and allow you to have some please.

Taking Care of YOU:

THIS IS VERY IMPORTANT. I am a caregiver, and I have been where many of the women and men on this site have been. Caregiver burnout. It is not pretty, and you do need to stop and take care of you. Even if it is stoping by the grocery store to get a magazine and read it for an our. More intensively what I would do is search out for a caregiver group. There are many at the local senior centers that are put on by various volunteers and some Social Workers, and/or Doctors/LPNs. It depends on exactly your area, calling your hospital.

I will give you more information in your private information. Hang in there and you are doing the best you can. Thanks for writing in. I want to say, people here are very nice, and feel free to ask away, all of us have needs, and have answers, as you do too. Right now, lean on those that can assist you. Prayers to you.

Everybody, thanks for your thoughts. When mom 1st got Parkinson's (well, she had symptoms for at least 3 yrs before going to Dr.) the Dr. immediately put her on Sinemet which made her sick as a dog. I told the Dr. that she was so sick she couldn't do her chores or go to stores so he gave her Zofran but emphasized only take it when she was super sick so mom wouldn't take it most times she was sick. She suffered thru the throwing up and awful feeling of nausea for long time. She had very small hand tremor and shuffled her feet and bent over from waist. Mentally she was fine until the Dr. increased her dosage each appt and while she moved better physically, she didn't smile and talk and act like herself. She continued to lose wt. while he continued dose upward and she slowly began to become confused and hallucinate. Mom and dad did their best to hide it from us but then it became so bad she was seeing and talking to the hallucinations and confused but then had a good day here and there, like the day we went to Dr. She was dressed, ready to go and could answer most of their questions. That day the Dr. changed her from Sinemet CR to regular sinemet and changed a couple of other meds. The next week she wandered off from home and she has been completely and totally confused and demented since that day. She doesn't know were she is, what yr. it is, etc. It was so sudden and I still have no idea. She has to be coached to dress, bathe. She's incontinent. What happened? We just can't wrap our brains around it..

Don't feel bad about your dad being in assisted living. You also have a life to live and have your own health problems. Parkinson's disease is a toughie. The hallucinations are infrequent. Sometimes using "tools" in a in appropriate manner ie: using scissors to scratch the hardwood floor or drawing on the walls. I had a patient like this in our assisted living facility. She was by far the most difficult patient to deal with in the group of dementia residents. 10 years is a long time to suffer with this, but its different for everybody. How about the Carbidopa/Levodopa combination of meds? This helped my client. Wishing you strength. Look after yourself.

A little over a hundred years ago Dr. Lewy, a researcher working with brain tissue from Parkinson's patients, discovered tiny clumps of a protein (alpha synuclein) that doesn't belong in the brain. These are now called Lewy Bodies. Depending on their location they cause the typical physical symptoms known as Parkinson's disease, or they cause dementia symptoms. Either set of symptoms can appear first but often the patient winds up with Lewy bodies located such that both kinds of symptoms appear.

Eight years is an extremely long time between the beginning of one set of symptoms to the onset of the other. According to my husband's neurologist, that MAY indicate a very slow progression will continue. After the initial symptoms are managed (usually with drugs) she may go a long time before getting worse.

All dementia types have fluctuations, but Lewy Body is known for them. It is even a diagnostic criterion. That means good periods, normal periods, hideous periods and around again. The periods may last for hours or weeks. The good news about that is there are usually times when the patient is lucid and can comprehend well what is going on. That gives caregivers and family an opportunity to include them in future planning, getting POA and other documents handled, and expressing love and caring. The difficult news about this is that those who are not aware of this fluctuation may feel the patient is "faking" the bad times or is seeking attention. Not true, but it can generate denial and anger in a spouse or adult child (or even sometimes a professional caregiver.)

I suggest that you learn all you can about the disease. Ask his neurologist for material. A good online place to start is LBDA.org Lewy Body Dementia Association's website. As you learn about the disease, try to bring your father along gradually.

My heart goes out to you. Every type of dementia is a burden for the one who has it and all of his or her loved ones. I think you will find good support on this site.

Both illnesses rob the brain of chemical messages which are vital for life. My sincere blessings with your family.

My hat's off to you for placing mom & dad in ass't living. The right decision. Been there and doing that/ kind of. 3 yrs. ago had to put husband in nursing home. PD symptoms had seemed sudden and he was diagnosed with PD at that time. He had taken a terrible fall resulting in hospitalization then couldn't walk and I was not able to take care of him. Like your dad, my husband was so mad at me! I felt guilty and all the rest of it believe me. Now, 3 years later, he cannot walk or talk, my guilt has subsided, he has adjusted (oh. he is 75) but I still visit almost daily. At least I can monitor or care give on a different level and I know he is safe and doing the best he can. PD is an insidious disease. Hard for us as well, so hang in there. Keep yourself strong and keep tuned in to this web site. It has awesome participants!

My brother's first symptom was memory issues; the Parkinson's symptoms came later, and he lived about 15 years after we realized something was very wrong. After his wife passed away, his son moved him into an apartment near them with a very good caregiver, and then eventually into their home with the caregiver during the day. Fortunately, his attitude.even with his memory fading in and out, was very good; he would have short periods of lucidity and then fade out again. His caregiver told me that she could tell he recognized people even when he was physically unable to communicate much.
On the other hand, my father-in-law developed the typical physical symptoms (tremor, balance problems) but no obvious dementia; he died suddenly of heart failure shortly after we began looking for a care facility, about 5 years after the tremor appeared. Each case is different.

Same thing going with my dad. It has been 9 years also and though not severe yet, he defiantly is getting dementia. We have a neuro appt next week every 6 months so we will see what he says. I'm not that thrilled with this neuro so if he isn't informative then off to try a new one. Hang in there, it is difficult watching a loved one go through this and having patience sometimes is very difficult. I'm the only one with my husband that takes him to all his appts. It is very difficult, especially when no siblings will help..hugs to you!

As JessieBelle said, Parkinson's and Dementia with Lewy bodies often occur together. For some people the dementia doesn't show right away, but 9 years is actually a long time, so the fact that dementia is now presenting doesn't sound abnormal.

My first thought was that the doctor could take her off of all medications to see if any of them are making her worse. But doing so, with her Parkinson's, could be dangerous or counterproductive, so you'd need a medical opinion. If you feel you need this, get a second opinion from a different neurologist and see what he or she says.

You're going to have to live with your dad being mad. That's very difficult, I know, but you have health conditions of your own and can do only so much. It's very likely that all of this stress is making your pain worse. If you can afford counseling, I think that could be a good idea. The support of a good counselor can be invaluable.

Please check back with us so that we know how you are doing.
Carol

emmie, Parkinsons (PD) and Dementia with Lewey bodies (LBD) often occur together. What name they gave the disease depends on which occurred first. There are Lewy bodies in both PD and LBD. Many people with PD never develop LBD (and vise versa), but a significant number do. The good news is that LBD responds to treatment, though it is still progressive. I hope that Jeanne will answer your post to give you some ideas about treatment possibilities for LBD. She cared for her husband for 10 years during his journey with LBD.