Wanderer26 Asked December 2011

I am taking care of a controlling grandfather with Parkinson's. I think something more is wrong with him, what should I do?

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I have been taking care of my grandfather since 2007 with my grandmother passed away. It's rough, I can tell you that. He has copd, parkinson's disease, and was recently diagnosed with stage 1 lung cancer which will be remove next month. Well, it seems as though he is too overbearing. I rarely go anywhere, but occasionally I will go to a friends house. I come back about 9 or 10pm, and I am automatically accused of laying out all night. I cannot talk on the phone without him thinking I am talking about him, and as bad as it sounds, when I even mention buying a car, I get yelled at. Look, I am not sure what's going on, but I am now under suspicion that his parkinsons is progressing ( he has moved to the stage of involuntary leg movement and cramping, and mouth movement), he's takes medicine unnecessarily, and that he may be having slight dementia issues. It seems that often, if he asks me a question about where something is, he thinks I am lying. Recently he wanted to go hunting, and asked me if I could find his coveralls. I looked for them, and told him I couldn't find them. I told him I was sure that my grandmother had given them to my uncle when he was working at some depot servicing large vehicles which she did. He didn't accept that, and made it out like I was lying. So, when I went to the store, and came back, he was sitting in the living room chair sulking. He made the comment to me that, "You were right,There's nothing but junk and decorations in the attic. I also looked for momma's (his name for my grandmother) wedding dress, and couldn't find it either." He swore the dress and coveralls were there recently, but I know they haven't been in years. I don't ever remember the wedding dress being in the attic in my lifetime, but I still got accused of throwing it away. Also, a few weeks ago, when he was finishing lunch, he dropped his napkin in the trash can, and I am not sure if he was thinking or not, but the next thing I know, he walks back to the trash can, picks of the napkin, and wipes the table off with it. I was shocked, but didn't say a word. I just got the spray bleach out of the cabinet, and wiped the entire table off. I don't know what to think, but I do think something is wrong. There is so much more I could add to this, but I will let you all think about this.

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IMAWannabe Nov 2012
Your Grandfather's unnecessarily taking medication may mean your Grandfather is overmedicated. Sometimes overmedication can cause more problems than just the Parkinson's symptoms. It sounds like it might be time for a serious discussion with his neurologist. Also, it also sounds like it is time for you or someone else to manage his medications. Consistent timing is quite important in the administration of his meds. Pill trays with daily times can be quite helpful. I do hear you frustration for all of these issues you have to deal with. I truly hope you have some other family that you can call upon. Perhaps if someone would visit with him while you go out, which you need, he would not be so antagonistic toward you when you come home. The sad part of all of this is that he can't help so much of this.
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Wanderer26 Jan 2012
Since I last wrote, things are still unstable. You never know what kind of day to expect, so I guess it's safe to say that you can expect anything. My grandfather had the section of his lung removed in which the dr. thought was cancer. Turns out, it was a granuloma instead, so that's some good news; however, like one of the other users warned me, he did have a fit in the hospital. He was unable to urinate on his own after surgery so the dr. put in a catheter. When the dr. mentioned him having to go home with the catheter temporarily, he through a fit. He told the nurses and dr. that he would rather blow his brains out than live with a catheter. It took me and the nurses a few hours of explaining to get him to realize that it was just until he went back to the dr. So, whether he liked it or not, he had to come home with it. It was that or come home with a nice uti and risk all kinds of infections. Anyway today he had it removed today, and the day has been hell mostly. I have had to deal with being verbally abused all day, and he accused me of telling the dr's not to give him enough meds. I don't recall being the dr. who make the decisions I can only tell them what is going on. But, anyhow today he was throwing a fit saying he needed more prednisone to help his breathing (he is on oxygen right now too). I had already given him his 20mg dose for the day, and he demanded I give him more, or he would go get whiskey and drink it. After I tried to explain that I had given him all the meds that were due to him that day, he got agitated, so I called the dr. and told the dr was was going on. They upped his dose to 40mg, but it's instructed so that he will be weaned off of it as he takes it. He also told the dr. that I didn't drive which is a lie, so he had to take himself to the dr even though he was driving against med. advice due to the fact that he just had surgery on the 4th. Needless to say it has been one long day, and even after giving him the full 40mg of prednisone, he was still demanding more. I went to the store, got the meds filled, and i am holding it in my purse until in the morning. I'm not use to him acting like this, and the last thing we need is an overdose.
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desert192 Dec 2011
My husband had PTSD (undiagnosed) when he had cataract surgery in 2008.(85) Immediately after the 2nd eye was done he developed dementia (mostly PTSD based) . Anesthetic most likely caused this. Be prepared for bad reaction from any surgery requiring anesthetic Do not have unless absolutely necessary.Of course, Doctors, hospitals, etc. say it doesn't happen - they would lose so much income if seniors stopped having elective surgery. They are their biggest "customers".
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Dear Wanderer26, Just a bit of info for you. My Mother had a very slight case of Parkinsons 8 months ago. Just a suspision on our part as her brother had it and mom's hand shook once in a while. Over the last couple years it shook a little more. She went into the hospital 8 months ago for MINOR surgery, just to release a tendon on her finger(trigger finger) . She should have had a "block" but her doctor didn't mention this to any of us. By the way she is 86years old. She went into surgery, and 15 minutes later the doctor came and told me she was fine, and would be ready to go home in about 45 minutes. Well, the mother I took in to the hospital, died that day. The person I took home that day was certainly not my mother. Her entire personality, demeanor, and some of her memory were gone. As a couple months passed and we kept waiting for the effects of the general anesthesia to wear off. They never did and as time passed she has gotten worse. My mother who was the greatest cook and baker, who had sewn beautiful quilts and clothes for 60 + years, for us as kids and for her great grandchildren, this "new" mother has trouble reading and following recipes, and can only sew if one of us kids tell her what to do next. To try and reason with her is a lost cause. She can no longer handle her own finances. Until 8 months ago she ran rings around us 4 kids. Vacations, shopping, cooking, baking, sewing, always there for anyone that needed her or her advice. She now is just lost. A very wise person on this site told me 6 months ago that "you will have to go to her world, as she now is unable to come to mine" and to be prepared for the roller coaster of my life. She was sooo right! Long story short. Since this has all come about, we have heard of many cases of the same thing happening to to other people from ages 56 - 78 yrs of age who go into the hospital and never come out the same. Seems this happens all the time. But surprise, every doctor, nurse, most everyone I have talked with "doesn't recall that happening to anyone they know". Her neurologist is the only one that spoke some about this and said that he is seeing lots of cases where this is happening. The Neuro also said that if anyone with Parkinsons has anesthesia (general) they have a very large chance of developing Parkinsons Dementia. Which brings me back to my mothers problem. Had we known in advance, we never would have let her have the anesthesia. I believe it's all about the money. The hospitals HAVE TO KNOW what is going on, as one of my sisters friends (age 62) had to be taken immediately from the hospital to a nursing home. Just do your homework before you let your grandfather have the surgery and make sure all documents (POA, LIVING WILL, ETC) signed, dotted and dated. Good luck. This will be a long road ahead of you, besure to take care of you too!!
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PDdaughter Dec 2011
Dear Wanderer26, some people who are diagnosed with PD show signs of personality changes before physical symptoms, while others develop PD-related dementia as the disease progresses (i.e., during advanced and late-state PD). By the time a person with PD is in the last stage (Stage 5), he/she has a very high chance of having developed PD dementia (PDD). It's best to have a mental health evaluation done to determine what kind of dementia your grandfather has since that will be key in what medication may help slow down its progression. If your grandfather won't undergo such an evaluation voluntarily, you might want to speak with his PD specialist (neurologist) privately before you take your grandfather to his next appointment so that, at least, a mini-evaluation can elegantly be slipped into the appointment without a big deal being made of it or the idea appearing to come from you.

I have a parent with PDD, so I know what you are dealing with and how difficult it is on you, especially emotionally. Putting up with the personality changes, irrational behavior, hurtful comments, inexplicable demands, etc. becomes more and more exhausting, confusing, frustrating and saddening.

I wish you all the best and hope that you can receive some support and coping tools from a local caregiver support group. Check out your local PD or Alzheimer's group, the latter of which accepts people with all kinds of dementias, not just Alzheimer's Disease. I have found this latter group to be more valuable to me than my local PD group, both in terms of emotional support as well as practical tools of handling the tough issues brought about by a loved one's dementia. Sending you a big hug.
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JaneB Dec 2011
There is a saying that people become more of who they are, when they get older. So know he isn't going to morph into the grandfather of your dreams, just because he is getting closer to death. You have to find ways to believe that his way of dealing with you isn;t personal, even though he feels like it is. Things are not right in his life -- he is ill, more fragile, can't do things he used to enjoy, doesn't have his wife -- and he is on some level looking for whose "fault" that is. His whole life is off kilter, and it's easier to think you are lying about the coveralls than that he is physically fragile and not as in charge of his destiny as he used to believe.

So see him differently. Find ways to stop needing him to see the kindness and generosity in you. And see what you can do to get help. Let his doc know, even in a note behind the scenes, what is going on, prior to the next visit. He is having surgery for cancer -- the hospital will almost certainly have a social worker who can help guide you. Be prepared for "hospital dementia," where older people sometimes lose their marbles in a strange setting. But get professional guidance, as you have access to it. Get other family members involved. Don't take this all on yourself. Good luck!
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Wanderer26 Dec 2011
PS. My grandfather also has both a physical and verbally abusive side to him. All of this, I am trying to cope with. I love him, but these antics are just going a little over board.
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