How do you handle the mental changes of Parkinson's disease?

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My husband was diagnosed about 15 years ago. Progress of PD was slow at first, but the tremors got worse and about 3 years ago he had a stimulator implanted and the tremors are 100% under control. Two years he felt the need to take early retirement because he felt he couldn't do his job. What worries me most now is his mental state. I see more and more symptoms piling up--confusion, inability to take his meds on his own, short term memory problems, REM sleep disorder. He's just not the same man who was the director of an Engineering Dept. and able to make decisions, and remember the decisions. I think I'm slowly getting used to all of this, but I find that I'm angry, alot. Frustrated, and tired beyond any fatigue I've ever felt. I have suffered from low grade depression for most of my life, so that definitely doesn't help in this matter. Any suggestions? Has anyone been in this situation and how did you handle it? The doctors recognize his problems and put him on excelon. Wish I had a patch to help me cope. I know that there are alot of you coping with a lot more than I am. Any suggestions are welcome.


Deedle, I am in a similar situation. Both your husband and my husband have protein deposits in their brains (called Lewy bodies after the researcher who discovered them). In our case these caused REM Behavior Disorder decades ago, then nine years ago obvious symptoms of dementia, and then gradually Parkinson's symptoms. In your case the Pakingson's came first, but the base pathology is the same. (My husband was a mechanical engineer.)

Having a spouse with dementia is EXTREMELY tiring and frustrating and depressing. Yes, wouldn't it be great if they had a patch for us caregivers? Some of the things that have helped me cope:

1) Directing the anger at the disease. When I have been short tempered with my husband I apologize when I calm down. "I am mad, honey, but not at you. I know you can't help this. It is that darn Lewy that I am mad at."

2) Personifying the disease a bit. We call it Lewy. "Lewy was really hard on you today, wasn't he? But tomorrow is a new day and maybe he won't show up at all. I'm always here for you. You'll never have to deal with Lewy alone."

3) Getting counseling and drug therapy for myself.

4) Even better than the therapy, attending a caregivers' support group.

5) Leaning everything I can about my husband's disease. This helps me know what to expect and to know that we are not alone. We aren't doing anything "wrong" -- this is just the nature of the disease.

A book I recommend every chance I get is "Loving Someone Who Has Dementia" by Pauline Boss. She gets it! For example, she understands that we lose the relationship between equals and now we have a dependent. But the choice isn't between a perfect relationship and no relationship ... she talks about aiming for the "good enough" relationship.

"Treasures in the Darkness" by Pat Snyder is about practical steps for early stage dementia of the Lewy variety. I'm not sure if you are beyond that point, but it is a fast read and good.

My husband is now on hospice care, so we are on the last leg of this sad journey. I have been blogging about this for a couple of years on CaringBridge. Let me know if you would like access to that.

Best wishes to you as you struggle with this very challenging life journey.
Thank you so much Jeanne. It does help just to know that there are others who are dealing/have dealt with this disease. My husband is still in denial about the dementia. We still call it his faulty memory. The doctor hasn't talked frankly about this. They agree after testing that he needs medication, but they don't give it a name. I guess that's for his sake, but I wanted the doctor to tell me more. Thanks for helping me to put a name on this enemy.
This has been very helpful to me. I feel impatient all the time. I pray for patience. If I just could stop being angry and impatient. I just feel hatred toward him a lot for being sick and making a caretaker out of me and then I feel guilty for having such feelings. He didnt ask for this. I am one miserable person. In fact, I am more miserable than he is, if you could believe it. He has late stage parkinsons and can walk with a walker but it seems every aspect of life is difficult. Well, thanks for letting me vent. I feel like a heel. He's the sick one and I think I complain more than he does.
I live with and caregive for my mom with Parkinson's and dementia. In the last few years and months the confusion, hallucinations, delusions, paranoia, and mobility problems have become overwhelming. Each time a new behaviour or delusion/hallucination appears it takes a while for me to be able to absorb and become accustomed to it and yes, I feel tired much of the time. Because of the stress of meeting constant challenges and never knowing what to expect each day or hour of the day, I have started to think I am a little like a person with post traumatic stress disorder. I know it has become difficult to sleep well, with me awake thinking about how best to handle all the ups and downs. I can see why depression is involved if you have been coping with this for fifteen years. I think caregiving is so stressful that it's impossible to be untouched by it. We're not robots and we're coping with a heck of a lot. Take care of yourself, too.
toughtocare and Lidiaparker55, I repeat the recommendation I made above ( a few years ago). Pauline Boss's book "Loving Someone Who Has Dementia" can be very helpful as you face these emotional issues.

My husband died a few weeks after my post above. His autopsy confirmed that he did indeed have Lewy bodies throughout his brain. I think it can help to know and to visualize that our loved ones have damage in their brains. It helps to not take their behavior too personally when we realize it is not fully under their control. We are not robots and we do have feelings! But it can help a little to Think about the disease process and to separate what it is doing from who are loved ones really are.
Book was not helpful. I hate my life. I hate my husband for having this disease. He is attention seeking, childlike, and loves to display his symptoms for relatives and anyone who comes over. I am in a state of rage most of the time. I am going to die of this. He is going to outlive me by far. I don't want pity or advice. Just venting.
FirstLogic, isn't that drug still in testing for Parkinson's?

Yes Nilotinib is still in testing for PD.
But due to the miraculous results the University Of Georgetown got from the study and the fact that it can only fix ailing cells; not bring dead ones back to life; I'm not waiting 15 years.

I and a group of like minded people are pooling our resources and getting some made and tested by a 3rd party lab, then we will be taking it... For R&D purposes...
You will find the us on Longecity.

It would seem that this and most forums don't like the idea of someone finding a 'cure' and posting about it everywhere they can..?
FirstLogic, it's not the information that is the issue, it's the fact that you had spammed over a dozen other forums here with the same thing. That is against the rules of the forum.

Firstlogic, it was tested on 12 people with no placebo group...that is not what i would consider a legitimate study. Secondly, you are encouraging people to buy drugs from China which does not have the same drug standards as the US. I'm sorry but I think your getting a little too excited, too soon.

Keep the conversation going (or start a new one)

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