More than dementia? Parkinsonism?

Threesisters

Hello, 

My mom is 76, but I saw the first signs of dementia in her when she was in her late 50’s or early 60’s.  In the mid 2000’s, she was still working but was making mistakes at work that didn’t seem normal and I knew then, something was going on.  My mom also had a tendency to fall easily, or just collapse.  She struggled with strength in her legs.  One time she went to push my daughter in a swing and just collapsed..I struggled to lift her up because it was dead weight.  I also noticed my mom had swallowing /choking issues.  I started to look into what could be going on, but life started to get more complicated.  In 2013, after a few months of treatment, my sister died of breast cancer.  Ever since then, my mom has been declining.  In 2015 I found out she had breast cancer. My mom started chemo and seemed more confused than ever.  I know people speak of “chemo brain”, but I decided my mom needed to see a neurologist.  They diagnosed her with vascular dementia.  

My mom lives with my dad, who is 80 and is overall, a healthy state mentally and physically.  He is amazing!  I live very close and also take care of my mom.  At this point I have to bath her and I take care of all of her doctor appointments etc.  I try my best. 

Within the last year I have really noticed a decline in my mom.  Everything from her speech, ability to walkers.  I have noticed some significant changes recently that are very upsetting.  I believe she still knows who I but at times looks at me like she doesn’t know.  It is hard going over and bring with her because there is no longer and form of a normal conversation.  She can still talk, but nothing makes sense and slot of times it is muffled.  She can’t walk or barely stand on her..struggles with uses a walker.  I have a hard time even showing her wear to place her hands on a walker.  She tells me she can’t remember how to move her legs.  I have also noticed that she hangs her head low or is always looking down, except sometimes when she is watching TV.  She also speaks about “Mary” who lives at their home.  The way my mom describes “Mary” almost makes think that my mom is seeing herself and what she used to be.  

On 1/1/21, my mom fell and was rushed to the hospital.  The neurologist that saw her there mentioned her saw signs of Parkinsonism in her.  This was the first time I ever heard that. It has similarities to Parkinson’s I guess, from what I read.  I made an appointment for her to see another neurologist that specializes in that and general movement disorders.  

I wanted to reach out to see if anyone else’s loved one has been diagnosed with Parkinsonism’s too?  If so, what symptoms did you see?  

Is it normal for her to completely lose the ability to walk?  I get sad because when I read about the stages, she is clearly more advanced.  

Thank you for reading my story (1st post..sorry so long) and answering my questions.  

M1

Hi threesisters and welcome. It is common to develop Parkinson's like motor symptoms in late stage dementia. You have said yourself that she is declining rapidly. I would suggest you call hospice agencies in your area for an assessment, or if she's in the hospital, she can be referred to hospice there. They can give you and your dad a lot of practical assistance to make sure she's well taken care of and comfortable. So sorry.....

jfkoc

My husband's diagnosis went from MCI>Parkinson's>Lewy Body Dementia. You are fortunate to have a movement disorder Dr anywhere near you. My husband had it seemed all of the non-motor symptoms, had balance issues but never a tremor.

I suggest that you read about Parkinson's non motor symptoms as well as Lewy Body Dementia. While much of the non-medical treatment remains the same for all dementia the drugs are a bit different.

SmithConz

My mom's journey is very similar to how you describe your mom's journey.  She, too, was labeled with "Parkinsonism" which the doctor described as experiencing some Parkinson symptoms. My mom also has Coronary Artery Disease and has had five heart attacks in the last ten years.  

The biggest struggle we have at the moment is helping her with how to position her body.  Her ability to comprehend movement commands (such as "do one side-step" or "place your hand on the white bar") is declining rapidly. On top of that, she is extremely weak in her legs, just as you describe your mom.  I am struggling with being able to get her positioned to sit on the toilet, positioned to sit on her couch, and pivoting to get into bed.  Like your mom, she sometimes forgets how to do things with her hand, like hold her walker handle (a grip motion); I have to physically move her hand to grip the handle.  We do all movements step-by-step, calmly and slowly, but her brain/foot and brain/hand connection is getting worse and worse, and then the weakness is on top of that.  

My dad, brother, and I all collaborate to take care of her together.  My dad is in good health physically, but is struggling with depression.  We try to give him breaks, but the only thing that cheers him is to see my mom acting normal-ish, which is becoming moments few and far between.  

Other symptoms I've noticed:  swallowing pills is difficult, choking on water, decrease in the types and quantity of food she'll eat, most conversations do not make sense anymore, increased agitation, confusion between television and reality (mixes the two), increased daytime sleepiness, thinks there are two of us (two of my brother, two of me, two of my dad).

Things we've tried:  the neurologist tried Carbidopa-Levidopa to help movement, but we did not see improvement; counting steps has helped in the past to get from point A to point B (it's getting harder now); she also got a "fidget kitty" similar to what you got your mom; I do paint with water with her whenever I can get her interested; and we are supplementing meals with nutritional shakes and other things that she will eat (eating for health has kind of gone out the window after she lost a bunch of weight).  

Some years ago, I read Being Mortal:  Medicine and What Matters in the End by Atul Gawande. I find myself thinking of snippets from this book as I see my mom going through things, especially when the author described the coughing/choking he heard as he dined at a cafeteria in an assisted living community.  

Sorry such a long response. I find so much in common with what your mom is going through and what my mom is going through.  My wish is that my mom will not have to suffer any more loss physically than she already has, but I am helpless to prevent this.  I take it day by day.  All the best to you, Threesisters.

abc123

To Three Sisters and Smith, I'm glad you found us. You are not alone in your journey. There are many wise people here with years of experience. They will help you, we will all support you. I'm so sorry to read about what your Mom's are experiencing. Once again, I'm glad you found us.

Threesisters

Hi Smithconz.  Thank you so much for reading and responding.  I cannot believe how similar our situations are.  I did some research regarding the stage my mom is in the other day.  It sound like she is in the late stages, but it is hard for me to accept that fact. It is nice that you are able to paint with your mom.  I have tried to do things with my mom but she seems to have little to no interest.  She did ask for a sewing machine a few months back but that wasn’t going to happen due to safety issues.  She really prefers to just sit and watch TV. 

Does your mom see any “ghosts” at all?  What about getting fixated on something in the house?  For example, my mom keep telling me they got a new fireplace installed and talks about it every time I am there.  The fireplace has been there since I was a child.  

It is really hard because when I go to my parents and see my mom, it is like she is physically there but that isn’t my mom.  It is so sad to see her go through all of this and I feel bad that my 12 year old daughter has to see grandma like this.  

Is your mom still polite to you?  Does she ever say anything mean or harsh?  I have been experiencing that now and then too.  

Thanks again for responding.  I wish you and your family well. 

SmithConz

Hi Threesisters,

I just found your reply to me!  Sorry I am just now seeing it. 

My mom has not seen any ghosts or any other hallucinations as far as I know.  She does get fixated on things in the house.  Currently, she is fixated on two figurines in her bedroom, a farmer man and wife, and talks about them incessantly.  She incorporates them into her reality- when she's going to get out of bed, she'll ask if they're going to get out of bed.  

Some months ago I was able to have my mom fill out checks for her monthly bills.  She SO enjoyed doing this work and feeling needed.  Currently, she cannot always write her name, much less numbers.  And the legibility is poor.  I still try to check her ability for the day and have her write something on the check.

I have noticed that when things are really awful with her physically and mentally, she has another UTI.  I have even been allowed to collect her urine specimen at home and bring it back to the clinic.  This has helped so much during this time of Covid and also just the challenge of getting her to the clinic.  

When she was her old self, she had such a nice disposition and personality, and she has largely maintained that.  I have noticed that she has said some harsh things to my brother and I when we're trying to help her, but that's not the norm.  Her grandkids range in ages from 16 - 26 and it is hard on all of them in different ways.  Sometimes I feel like I don't want them to experience this crappy part of life yet, they're too young, but then I remember that their peers go through hard experiences, too, even if not exactly the same. 

Thank you for sharing your experiences.  

Azadi

My mom's neurologist stated that she was in the later stage of Alzheimer's before she passed away. At times, one of her hands started shaking. She was not able to write or work with numbers anymore. She started getting more agitated and I had to rely on medicine more and more. If I was late on her medication, it would be too late and she would not take her medicine.   I did not know that sometimes they start having Parkinson's behavior. Knowing more about her future scared me so much that I did not want to read about the later stages of this disease. I was her caretaker and I knew my life would change for worse at the same time she was declining.