For those who care for someone with Parkinson's disease
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Can someone please explain to me why my PWP can be in the same room while I am so busy and exhausted carrying heavy bags with a very sore back non stop working for hours and not offer to help in some very small way or even acknowledge that I am carrying a very heavy load both physically and otherwise. When I spell it out to him he still does not acknowledge it. I know that most of the time he cannot physically help me but just a verbal acknowledgement would really help me not to be resentful. I feel like if I could just understand the mechanics of parkinson's that prevents him from not caring for me in this way it would really help me to forgive him but right now I am torn between "its the parkinson's " and "he just doesn't care". Thoughts please? |
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Hi Checkmate, it's late and I'm pretty tired--but here's a quick answer. The dopamine which is missing in PD is the brain chemical that is involved in experiencing empathy. The inability to put himself in another person's place is actually a very well studied phenomenon of PD called "theory of mind." There is a particular brain region which, if damaged by accident or disease, short circuits the experience of empathy. For me, I have to just tell my PWP what I need. Something like this "John --I am carrying packages, and you can manage this one." And then expect him to do it. Sort of like he is a youngster who has not yet learned what it means to notice and care about others' needs. If I have time/energy tomorrow I'll look up the article -- which I posted on this forum a couple of years ago when a similar topic was raised. |
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| Thank you. I needed this tonight. |
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| Yes thank you!!!.... hopefully you can find that article... really want to read it... |
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Thank you Violet. That really helps. Now has anyone got articles on acceptance? |
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| Hi Checkmate, I've finally come to the conclusion that my hubby is not able to recognize my pain or sadness. It's hard to come to terms with it. It's harder now because he not only doesn't communicate but it's like he isn't aware of much most of the time. This morning when I was lifting his legs out of bed I winced in pain and he thought I was kidding and he laughed. I'm trying to accept the fact that it isn't that he doesn't care but that he just doesn't understand. I keep trying to remember this but it often just makes me cry. I pray for patience and compassion. |
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This is what I posted. See the thread in January 2017 on apathy: About the apathy - These articles arehelpful, I think. http://www.medpagetoday.com/neurology/parkinsonsdisease/3702 https://www.ncbi.nlm.nih.gov/pubmed/25895932 What I have learned is that the apathy comes from changes in "the frontal subcortical systems such as the anterior cingulate-mesial frontal cortex that are thought to be involved in apathy". The person himself/herself is not troubled by the apathy since the part of the brain that generates feelings of interest and motivation are numbed. So they can't find interest. These researchers say that this makes it important to distinguish depression from Parkinson's apathy. And anti-depressants won't really help. The authors also say: "Patients themselves generally do not complain of apathy because, by definition, they do not care and are comfortable not engaging in many activities," she wrote. "It is likely that the patients themselves may not have strong feelings about whether or not a medication is indicated to motivate them." All of which does not count for a hill of beans when it comes to being the other half of a Parkinson's couple. But since our partners don't care, because they can't care, I think we have to treat this as a symptom that is not changeable with current medications or interventions (to my knowledge). I have made my own peace with doing things on my own -- simple ones like going for a walk, bigger ones like visiting friends and even occasional long ones like taking a 4 day mini-vacation. Our marriage as a marriage is just gone. And I hate that. |
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I'm brand new to this forum, but I TOTALLY empathize with you. My husband's apathy, lack of motivation, is the bane of my existence. Now, I am more conscious of my own need to fight the influence of that apathy to keep myself engaged and intentional about my own activities. |
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| This is such an interesting and informative post. My husband's apathy has grown and grown. He will NOT exercise even though our doc prescribed home health care. OT, PT and speech and hearing. They all gave him movements to work on to improve his mobility, and movement but he didn't do them. He will be released in two weeks and be even more immobile than he is now. I thought he was just lazy but I understand now that the PD causes apathy. I am, myself, getting more and more apathetic about going out on social occassions. I am so tired most of the time that I don't care if I see people. |
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| A consideration. It is hard to explain how Parkinson's works to many, but our brains are electric, so thinking of a circuit you have power running along a wire then there is a gap that has a fuse in it so power can flow to it's function or goal, a lamp doorbell, coffee maker. In the brain dopamine is a fuse, thought or intention (power) runs down the nerve to the gap (synapse) dopamine (fuse) fills the gap and the thought or action flows through to completion. As the disease progresses less and less dopamine is made so less and less fuses are available for the brain to use and function. Our Brains are wonderful in routing dopamine to the gaps that are needed. However when the demand outweighs supply problems arise and the brain steps in rerouting fuses. It might think heartbeat, breathing both outweigh the apathetic response so reroute the dopamine to heart and lungs. Our whole body and all our organs are run by electricity our nerves and synapses as in all wiring need fuses (dopamine) to complete action. So if the region for apathy shuts down or has poor response the brain probably shuffled the dopamine supply around to run systems that are crucial running the body. Our brain deems the thump, thump of a heart pumping blood to be of more value than apathy at that point. And not we patients and you caregivers or anyone else for that matter can willfully shuffle the dopamine around. As the disease progresses the brain sends dopamine to the systems that keep us alive at the cost of other systems it deems less important. In the case of this thread apathy. |
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| Al, brilliant analogy and explanation. May I copy and share with those who don't understand? |
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| Thanks Mak, Of course feel free to copy and share. |
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| What a great explanation! Thank you so much for your insight. |
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| Al, I read your description out loud to my Husband and his caregiver. Your use of an easily understandable reason for the lack of empathy, or really any emotion at all, including using good judgement, really hit home with both of them. What would we do without you? Happy Thanksgiving from Bellflower, California |
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thanks "guys" I try, Happy Thanksgiving all. from the Beautiful Berkshires in Western Massachusetts. |