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Topic Grandma is not listening. Go to previous topic Go to next topic Go to higher level

By gonnagobald On 2009.08.03 00:50
Hi there!

My grandma is 89 and has had PD for about 10 or so years. She doesnt take her Sinemet regularly as she says it does nothing for her. About three weeks ago she went off the meds and her DR told her that if she didnt feel they were helping her then to just not take them anymore. So for three weeks grandma has been off of them. About two days ago she decided to start them back up agan without talkign to me. She says now that she knows she needs to be on the meds. The only real problem she had while off Sinemet was the tremors got worse. But now after taking them the tremor is still there but not as bad. She is having a harder time getting around and is light headed. This morning she said she didnt feel right and so i had the ambulance come and take her to get checked out. She was there for less than 30 minutes before she was discharged because there was nothing they could do and it was just the parkinsons progressing.

I can't get ahold of her Dr because she just went out of practice on the first.

Grandma gets around decently in the house with the use of her cane and she has lost a little over 10 lbs in the past two months. She is currently around 92 lbs. She drinks ensure everyday to get some of her nutrition. She shuffles her walk and often times becomes confused with normal everyday things. She is also mean alot anymore. She has been hallucinating while on the sinemet often waking up and hearing somehting on the TV and thinking someone is in her room. She is also having an extremely hard time swalling and refuses to have her liquids thickening.
My question is this...I dont know what stages she is in in her disease and am concerned because her weight has dropped considerable.

Doesnt it sound to you guys that she is getting worse? I mean she used to be very active. I dont know what to do, if we should let nature take its course or what? I have my hands up in the air.....

Please, any advice would be great!

By susger8 On 2009.08.03 08:07
In the last stage, the person with PD usually is pretty much bedridden, so it doesn't sound as if she's quite there yet. Losing that much weight quickly is not a good sign. Confusion and hallucinations are common in the later stages -- some of it is from PD and some from the medications. Difficulty in swallowing is another thing that happens toward the later stages, and it's quite a problem. It's easy for the person to inhale food into the lungs, which contributes to pneumonia.

PD is a progressive disease, and it inevitably gets worse. If her doctor (a neurologist, I hope) has gone out of practice, she should certainly have a new doctor right away. You wouldn't want her to have an emergency and not have a neurologist to work with.

What is her living situation?

By gonnagobald On 2009.08.03 12:31
She's not bedridden yet, she continues to move about the house but slowly and wobbly. She lives in her own home and the only reason she is able to do that is because I moved in to care for her.

I called her Dr's office this morning and they said that her dr was going to be elaving practice the 11th of this month, so obviously the hospital didn't even try to get ahold of her and her office does not have an after hours number.

As for the stages, that is what I'm wondering about. I have no idea what stage she is in. She goes back and forth between being completly lucid and all there mentally to being way out of it and very confused. I find that I am repeating alot of what I say to her and she loves to argue so she says I never tell her things in the first place. I'm seeing alot of child-like things about her in her demeanor and behavior. I don't know if it is just her personality or if it's the disease. She likes to be in control of everything and I'm trying to set boundaries with her but it's very difficult.

I have been living with her since October of last year and it's getting harder and harder to deal with her mood changes. She can go from being very sweet to extremely mean in a matter of minutes and I often put the blame on her disease.

My other question is this....when people with PD get maniulative and controlling, I have had people telling me that I need to draw lines and set this okay? I mean, she is an adult woman and I feel like I'm infringing on her rights as a person....does this make sense?

By tryinghard On 2009.08.03 13:21
I know what you mean about the mood swings. My dad too can be very nice one moment and downright mean the next. He acts like a 2 year old so I have to tell him what to do like he is my child instead of my dad. He told me he doesn't like the way I treat him! I can't tell you how much that hurt. But it is part of the disease like it or not. At least that's my mantra from now on. You do what you need to do to keep her safe. Let her complain all she wants. I tell him to use his walker but he gets up and laughs in my face and shuffles away then stumbles and if i'm not there to catch him he falls. all he does is laugh. His neurologist too says there's nothing more they can do for him it's the pd progressing. Keep writing your posts. Keep reading others', it's done alot for me and I just signed up a couple of days ago!

By susger8 On 2009.08.03 13:41
PD is like a roller coaster -- constant ups and downs, and different from moment to moment.

The uncooperativeness and childishness are part of the disease. The personality can change completely.

Drawing lines can have limited effectiveness, since your grandmother may not even remember what she agreed to yesterday. Like tryinghard, I do my best to keep my dad safe, but I can't prevent every problem.

Do you have power of attorney? Have you considered next steps if things get to be too much for you to handle? Do you have a social worker helping you to figure things out?

By bandido1 On 2009.08.03 14:54
gonnago bald: from patient Bob C---use the search button, search for my posts under bandido1 and click june 20, 2009. It includes my answers for dealing with people who need to be controlled. Good luck! Bob C

By Pearly4 On 2009.08.03 16:50
We found my mother's anger diminished and her moods stabilized with the introduction of Aricept. Not sure if she was reacting to an underlying knowledge that she was undergoing changes and "losing it", but whether it actually stabilized things. We also arranged for a social worker to make house calls (through her case manager at aging resources) -- a few months of every other week visits helped greatly also.

It does not good to set limits on your grandmother (or my mother). As someone else has already said she probably won't remember them tomorrow anyway. Set limits on yourself instead -- my husband had to prompt me sometimes but I found I could only control the way I responded to her, not her responses to me. When she started an argument, I refused to argue. When she tried to provoke me, I refused to provoke. Walk away. Change the subject. A noncomittal "oh?" works wonders.

It's so hard on that side to do it and so easy from my side (my mother died in June) to say it, I know, but you can learn.

By tryinghard On 2009.08.03 19:53
Hi pearly4, I'm sorry about your mom. You are so right when you suggest setting limits on yourself. My dads pd has been getting worse and my husband told me to just leave him alone. I can't make him do what I want him to do no matter what so all I can do is try to keep him safe and hope , pray for the best.

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