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?

Follow
Share

8 yrs. ago we noticed that my mom, until then perfectly healthy, was bending over from the waist and shuffling her feet when she walked and she was losing some wt. without trying. I tried to get her to go to Dr. for 3 yrs but she wouldn't go. She continued to lose wt. slowly and consistently. I was wondering if she was scared to go to Dr. thinking it might be cancer but finally she went and the Dr. said she had Parkinson's but totally ignored the fact that by now she had lost almost 30lbs. The neuro Dr. started her on Sinemet and gradually increased the dose. Poor mom suffered severe nausea and some vomiting from the med which got better. He kept increasing the med as her symptoms decreased but no one did anything about her wt. loss. Then 1 day she began to hallucinate and become confused. Both of these increased until just the other day when she went out of the house, lost, confused as to time and date. Police were called and she was taken to hospital. She couldn't tell you the date (1916) or where she was or why she was there but did know me. They added Seroquel to her meds and she was in hospital being evaluated for almost 2 wks. Now they say she has dementia. How can you progress from healthy 9 yrs ago to Parkinson to dementia? Can anyone please help me? My father is in total denial. I have gotten them in memory care unit at assisted liv. facility where my father hates it and me for putting them there. He had been in hospital and rehab before and after her hospitalization so I was running between the 2 trying to take care of them while I have disabling back pain 24/7 and fibromyalgia. I have put myself on the back burner and just about killed myself trying to take care of them but I'm mentally falling apart now. My dad's mad at me, my mom's so confused and it's all hitting me. I have no support system except my husband and need to get POA for my parent's financial and health decisions. I'm physically in pain 24/7 and just don't know how to keep going or how all this happened so fast.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
14

Answers

Show:
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
Helpful Answer (0)
Report

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.
Helpful Answer (4)
Report

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!
Helpful Answer (3)
Report

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.
Helpful Answer (2)
Report

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!
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (1)
Report

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.
Helpful Answer (1)
Report

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.
Helpful Answer (1)
Report

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.
Helpful Answer (0)
Report

See All Answers
This question has been closed for answers. Ask a New Question.
Related
Questions