That is a nice way of saying self centered. Does everything seem to revolve around their wants and/or needs? Do they change the schedule you have for yourself for the day, to something they want? Do they expect you to become their hands and feet, (I call it fetch and carry) If they do, do you think is is more of them condensing into themselves, writing is small, voice is smaller, posture is smaller, world view around then is smaller narrowing down to just them? Are they excessive and/or compulsive?
Caregivers of PWPD, do your people become... - Cure Parkinson's
Caregivers of PWPD, do your people become more self absorbed with themselves, and what they want and do as they advance in the disease?
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cjsg
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Thank-you for your response. That is an interesting way of thinking about the phenomena. I wonder how much PWPD are aware that they are doing it.
I am the care giver and I would say yes, yes, yes. There is no room left but for the sufferer. I understand it is awful, but it sure gets tiresome. There is no choice for us, and they don't want to be that way, but that is their reality, total self-absorption.
I have moderate PD, and am also a caregiver of my wife, who is a diabetic and is in heart failure. I really don't have time to be self-absorbed in my problems. If I'm having a bad day with PD, my wife trys to help a little, but she is very limited. I do most of the chores around the house, even though, it is difficult on bad days. Exhaustion is a problem for me. I also have Ataxia and Anemia, so, there are times, when my balance is way off, and I have to nap, a bit, to have strength to get through the day. I wouldn't call that self-centered, it's more of a necessary thing for me.So, life is challenging, at times, for me and my wife. My motto is 'Carry on!'
Wow, as if PD wasn't enough!
I can see why you are exhausted! is there any way you could get some help for a few hours a day? I looked into it with the Area Agency on Aging. Maybe your doctor can help with ideas. There are colleges that require their students to do community service for one reason or another, maybe they have nursing students that could help. If your wife is in heart failure couldn't hospice help? I know a person who was very sick and went into Hospice care. When he was better he went out of it. I wish I could help more that just with ideas.
Yes, yes, yes.! It seems every time he stops doing a task eg dishes and folding washing he will never do it again and doesn’t think of helping. I don’t think it is that he can’t do it, just doesn’t feel like it. But if it is something he enjoys he can still do it! I think it is because the dopamine required to do an enjoyable thing is less than a chore!
Yes, they can do the things they want to do and spend ALL DAY doing it (if they have a fetch and carry person that stops what they were doing, to help the PWPD) I was wondering if that is obsessive.compulsive, or the brain is working well. Sometimes it makes it hard to hate the disease and love the person. I always think of the PWPD that live alone and how they get by with NO help. We have several in our Delay the Disease exercise class, and a couple in a PD support group. It seems to me that the ones that have to take care of themselves have an easier time in class. No falls, at least in class, they still drive. I only see them in class but they amaze me.
I will say that when my hubby is doing something he want to do it is almost an obsession and he gets very particular that everything is don't right. He will spend all day several days in a row. He seems to stress out, and have worce PD for a few days after his project is done.. DK if it is because the project is done and his brain goes off or he has spent to much energy doing the job.
I will also say he has told me to call a plumber when the flapper needed changed, to buy a new door and have it installed when I asked him to bend a part so the top window would stop coming out. I am trying to make him feel useful, but he doesn't want to do any of those things.
One other item of interest that I hear from partners of PWPD ( and I hear this too) ---I feel so useless. I say you might not be able to do all the things you want to do, but you are not useless, you can help me with the dishes or folding clothes so I have some time to help you with what you want to do. I think he feels useless because he can't do what HE WANT TO DO, and can't think of anyone but himself. PULLING IN TO HIMSELF.
I truly am not complaining, I am trying to understand it so it is easier for me to deal with. I also wonder if we can get them to do other things (that might not want to do if their PD might get better all around.
A couple of years ago hubby used to do the dished, his hands were warm and he liked that. Now he doesn't do the dishes even when I ask and remind him it makes his hands warm. More pulling into himself?
Call me confused.
Perhaps as the symptoms of PD get worse - balance, falls, dementia, the growing dependence on taking medication, reaction of others to PD symptoms, facial masking of one's emotional expression as an isolator, inability to speak loudly (or be heard) - maybe these things add up to a tendency to become withdrawn and self centered. I'd suggest that PwP be given a little rope here (and not to hang themselves with ! ).
Then of course, there is "apathy" - a sad symptom for many that slips in and really steals many dimensions of life away.
A powerful antidote to all this is to cultivate a sense of gratitude for the things you do have, the people who love you, the things you can do and the chance of life that you have been given. Allow yourself a half hour in the morning to laser concentrate on this. If you're having a "challenging day" supplement with another half hour in the afternoon.
Stir vigorously until well mixed and top with a cherry.
Thank-you for your reply. I am trying to understand what and why is going on here, and if there is someway to use what we know to make the PWPD more happy, and self-sufficient. I am always looking for answers.
I cut my hubby a lot of brakes, the most recent has been holding a uranel at 3 am the past several nights, instead of making him struggle to try to get to the bathroom, or to keep his dignity by not wearing a inconstancy brief to bed. I am looking at this divice amazon.com/dp/B003C3P174/?c.... As an answer to that problem, to help us both.
When I can't take the demands anymore, I tell him to call a friend, or brother and talk to them a while, to discuss sports, hobbies , movies or whatever. I go for a 15 minute walk, while he has the phone in his hand. If they can't hear him, they tell him to speak louder, if he gets to "off the wall" they generally go along with it long enough for my walk to be over, and love him enough to talk to him again.
So true....
We recently met with a LSVT trained therapist. Her explanations were the clearest and best we have yet to experience. She told us the Parkinson’s patient thinks that small voice and small step is perfectly normal. If they work to speak like they used to or walk like they used to, it translates to shouting and walking with giant steps to them. In other words, less dopamine equals smaller world. It isn’t a conscious choice. She had a much longer explanation, of course, but some things she said made far more sense than any explanation from my husband’s various docs or his motion disorder specialist.
Yes I have heard this before, thanks for the reminder. A friend who has PD whispers directly into my ear and says she is yelling. Sometimes when my hubby is talking softly I say yell louder or you will end up like her. It is comforting to know that when he needs/ wants me he CAN still yell. I have also purchased hearing aids because I know it is not all his problem.
Everyone with Parkinson’s is different and I think it depends on what strain of the disease one has ,what the current symptoms are and what the progression is. I have always been the person in charge of my family and always the caregiver. When I have to ask for help with something I used to do for myself, I am impatient, angy and embarrassed and have to fight the desire to lash out or feel sorry for myself. Loss of ability is a bitter pill to swallow.
And don’t forget the depression aspect that can come with Parkinson’s. I was a mental health clinician and can tell you first hand that people with clinical depression can present as extremely self centered,demanding and difficult to be around. I would venture to suggest that your loved one doesn’t enjoy being like this either and could use some help sorting things out with a professional.
You will need some support as well; most areas have some type of caregiver support groups that can be helpful even if they aren’t specific to Parkinson’s.
Good luck to you!
His new PCP asked hubby if he thought his antidepressant was working and hubby said yes, but hubby had circled every issue under mental health on the intake paper. Obviously it is not working. Hubby had a counselor but she moved and he will not start all over with a new one. I asked my PCP to increase my antidepressant because I was getting very angry again. I was told anger is a form of depression, I guess it is because a person feels they are out of control of himself and situations.
So yes we both are on antidepressants. I work everyday on hating the disease and loving my husband.
I think every PWPD is different but I wonder if self centered should be listed under non- motor symptoms.
Yes. I am the caregiver for my wife and your post and the replies are exactly on point. Reading these certainly made me feel validated. Thanks to the post and all who replied. 😊
Like I said to DianeF I think self centeredness should be listed under non-motor symptoms. Every caregiver I have asked, and I know 9 personally who take care of PWPD say the same thing. I can't change the PWPD, I can only change myself. I count this post as a survey and information gathering. Oh I have talked to one caregiver whos husband did not have PD and she said her hubby was demanding and definitely not himself at the end of his life. DK what that means in accordance with the PD or not.
I wanted to know if it was true of most PWPD and how it is handled. I would also like to know why. Depression is definitely one cause, feeling angry and useless another, What elce and how do you handle it?
I am finding this conversation very interesting, as I see many Parkinson's patients are like my husband. His stress causes him to totally make him unable to function, but he keeps trying to do the very thing that stresses him out. It is a vicious circle and much worse as the Parkinson's advances. I think I am getting an ulcer. I know I am fortunate to not be the one with the Parkinson's, but I share a great deal of it. We have been married 57 years. Neither of us expected this to be what the count down to the end of our lives would be.
That is the unfortunate part! Neither my wife or I expected our last year's would be that we would both be diagnosed, and have to live and deal with difficult, chronic, incurable ailments! It is what it is, though, and, sometimes, we just have to make the best of it and carry on!
Yes exactly to your first paragraph. The movement disorder doctor took my hubby off of requip in hopes that that would lessen the obsessive/compulsion. So far it has not. C/L can also cause obsessive/compulsive behavior and we can not stop taking that. I wish I could say something to help you but all I can say is you are not alone, and that doesn't get the wheelchair in the car, or let you sleep at night when PWPD can't for one reason or another.
Has your doctor ever suggested anxiety medication for you husband? Did it help if the doctor did prescribe it? We have started the high dose B1 and I hope that helps. I have wondered if the pump that puts meds into the stomach and then the intestine would help with the obsessive/compulsive behavior because a lot less medication is required. The pump comes with it's own problems and cost though. We have been together 49 years and this is not how we expected our retirement to go also.
You are completely correct. I hate PD and what it has done to my hubby, but I love my hubby even when he is not himself. He did not choose to have PD. He works very very hard to not let PD, and the function of his body define him. We are in this together, the disease is hard on everyone, only in different ways., We both would give up all our material goods to not have PD in our life and the lives of our family and friends.
Yeah, I try so hard to find one supplement after another to help my husband. Have had appointments in the last week with Gastroenterologist for stomach that hurts due to stress, surgeon for hernia, neurologist for medication changes (wearing off problems) and psychologist to see if maybe DBS would help. Life is one big medical appointment. I can't imagine the stress of having two Parkinson's patients in one family, taking care of each other.
The idea of DBS just scares me, You might want to check into the duopa intestinal gel pump I would go the dupo pump route before DBS but the pump has its own problems Two guesses who takes care of the pump and it's maintenance and other problems?
Since we don't have either who am I to have opinion. Do what you think is best for you!
I have not found any supplement that helps.
We have been taking CoQ10, Curcumin, Probiotics muly-vit, DHEA for years if they helped I sure couldn't tell it . There is always hope while looking for answers.
I hope your gastroenterologist does not find ulcers and tells you to take a break from your huhand. Then you can ask her for suggestions on how to do that.
I corresponded with a relative whose husband was dying from a brain tumor. She took time for herself, to do what she wanted to do, even if it was for a short time. She said it helped her get through it. She would knit, or sew, or read, I do strength training. Concentrate just on it and my form, the weight I am using and how many reps I have done. I only get in 10 minutes or so a couple times a day but it is just for me time, and really I don't know if I could do much more than a few minutes a few times a day 
It is the JUST FOR ME that helps.
Mine is just 58, I am 55 so it could be a lot of years.😕
I have been weaning him off his mirtazapine antidepressant and he is on lots of supplements eg b1, b multi, multi, fish oil dopa mucuna, d,k, mg, b12s and mannose. His face has definitely improved and is actually smiling now and I think his motivation to do things has improved a bit. He is now not depressed and not as anxious as he was when he went on the antidepressants. I actually wondered if the fatigue and apathy is caused by the mirtazapine as it has some of the same symptoms so will be interested to see how he is once he is off it. It has been 3 months slowly decreasing it after talking to the dr so don’t just go cold turkey as it really messes with the brain. It is like coming off heroin I think!
The football game is over and my time is up. Good luck and good life to you and your husband
At this point in time, I am just about 100%. Well . . . that is getting harder and harder to fib about. I can get the dishwasher about half full before my back is on fire but I power through it. The way I look at it, I'm going to keep pushing and stave off the time of being dependent and possibly disagreeable as long as possible.
I'm consciously trying to do as much as I can. My wife has difficulty walking with four hip replacements so we are powering forward with all we can muster. Our kids really have no idea the difficulties that we face. I'm getting better and better of "asking others or paying others to help.
I hear of other situations of PwPs involving catheters and colonoscopy bags and I think we have an easy "row to hoe". There is part of me that thinks that PwPs just need to do more "kick assing" of themselves and wake up to the fact that PD is potentially more detrimental to the Caregiver than it is to the PwP. At which point I think, "Do I want to be remembered with a smile or a grimace ? Then I get motivated.
Easy question to answer from my current perch. My private anguish is being in la la land with dementia and being remembered as a colossal burden at the end. I suspect there are more than a few PwPs who share a similar concern.
You are a courageous soul, Frank. You're a fighter and you got a lot of character. I'm not happy that my wife has to carry my plate of food or empty the dishwasher, but in some ways, that's the petty stuff. My wife and I have never said that single crossword to each other. I do everything I can to make her laugh a few times a day. What I fear is becoming depressed, obnoxious or in some way burdensome to her spirit, to her psychologically. I'll pull the plug before I let that happen. Betty Davis said getting old ain't no place for sissies. Neither is Parkinson's.
My husband's neurologist, an unpleasant man , has referred to him as having Lewey Body Dementia, Parkinson's dementia, and cognitive impairment. The psychologist we saw recently who ran a lot of tests, says he does not have dementia; he simply has his thinking slowed down like everything else Parkinson's slows down. You write very intelligently, I don't think you have dementia now and chances are good you won't get dementia.
I have been thinking about your husband's neurologist being an unpleasant man. Can you find another neurologist? We saw 4 different neurologists before we settled on the one we wanted to work with. He is an hours drive away but we are willing to drive that far to see him. It is hard to set up an appointment if it isn't done at the time of the visit, and communication is through a patient portal if not at the time of visit but he is still worth all the inconvenience. His appointments are set for 45 minutes. He is always willing to write a script for OT, PT, or speech, to let us try something different. One of our friends with PD went to him last week and she talked to him about high B1 therapy. His reply was can't hurt, might help. He works with a group of neurologists so he can consult with them if he want/need to. It is important to be able to trust the doctor, be able to work with him as part of a team, and it is always nice to find them at least pleasant if not friendly. Are you in a situation that you can't change doctors?
We changed doctors a couple of weeks ago. He is a motion specialist and we are pleased with him.It took months to get an appointment with him. He changed my husband's medication. He is harder to drive to, but it doesn't seem like we are hated by our own doctor. Right now we are dealing with the pain my husband has in his stomach and that seems to be caused by stress. Thank you for your reply, his previous doctor made me cry in his office with his horrible comments to my husband like," I've never had a patient like you (when dealing with his wearing off) and ,"No other doctor would want you either."
If one goes to the old neurologist's reviews, hardly anyone likes him, but we are stuck with him here because he takes our insurance.
Sound to me like he needs to be reported to the hospital if he works in/for a hospital. I am not sure who you would talk to if he has his own practice, but I will ask around about that. I do understand about insurance problems. The health insurance has been "slim pickings" as fare as doctors for my husband but the insurance he has pays for his meds. We just found a new PCP that takes my hubby's insurance and we are very impressed with him. I have read that PWPD that have motion specialist neurologists, do A LOT BETTER because that is the doctors speciality and he deals with it everyday.
I just realised as I write this that our movement disorder doctor took my husband off of requip trying to stop hubbys obsessive/compulsive. It didn't help but that was the med that was so expensive, and other insurances would not pay for. Now we can get him some better insurance. Are you in a situation like that? If you live in the USA and are on medicare enrollment has started for next year and you can change health insurance up until December 7th. I find picking a health insurance from all the ones out there confusing so we go to a insurance broker. I asked friends who they used to help them decide what insurance to get. When a few said the same person, we went with that one. I hope you take care of yourself as you take care of your husband.
The comment about guess who will have to manage the pump made me chuckle. Good to have a sense of humor about things!
Thank you for caring. My husband is now on Rytary and it seems to be working fairly well.
When we no longer need a neurologist, I will complain about the bad one. I don't want to be seen as a trouble maker and not get specialists to see my husband. I'm okay, just really tired of all the problems we have with Parkinson's and my husband is very focused on his misery which makes it worse. But, as I pointed out, how Bill Gates partner in Microsoft died with all his millions not keeping him alive at 65, its' just the luck of the draw.He has been fortunate to have many good years with his kids and grand kids, despite the Parkinson's. We like our Medicare supplement, it costs nothing each month and has a $5 copay.
Rytary is very expensive, about $300 a month, but we are getting it free through a charitable organization our new neurologist set us up with.
I am very glad your new movement neurologist is pleasant and that he has helped you get the med at for free!
My husband had a uncle that focused on being miserable more and more as he got older. This uncle was in excellent health, till he passed of old age. When my hubby is complaining or grouching more than I want to deal with, I tell my husband he is acting like Uncle Whitey, sometimes my hubby will smile and stop. Have an "Uncle Whiteys in the family that you can compare your hubby to?
This PD forum is a place I can get away to, without leaving home. Someone is always posting new information about PD that they have researched. It is large, all over the world, which helps me to remember we are not isolated. There are people on this sight that have, or are going through everything from deep brain stimulation to exercise therapy to supplement therapy, to the big and loud program. Everyone cares, and everyone on the sight shares our life style, everyone wants to help each other.
PS We live in central California on the coast.
I live near Fresno and my neurologist is busy but pleasant enough. I'm on Medicare and my co-pay is $75 per visit. If Fresno is close enough to you, I'll ask if he's taking any new patients. Or have you found one that you like well enough? BTW, I've been on Rytary for 3 years and it's by far the most useful PD med I've used.
We are happy with our new neurologist, but thank you. He is in Pismo Beach. He was recommended to us by our old neurologist who didn't want us any longer. As the assistant to our primary care doctor said, "Neurologists can be a funny bunch." The first one wouldn't return our calls after she made money testing him, and the next one left town within two weeks and took all of his medical records with him.
There are so many nice people on this site trying to help me!!
Yes, it's the best forum I've found for PD. They are a very knowledgeable, pleasant bunch. Optimistic yet realistic at times. I lived in Cayucos near Morro Bay over 25 years ago, then in Santa Cruz for a few years about 10 years ago. Now my wife and I live near Yosemite. I miss the ocean, but here is nice too.
If you need to bounce ideas around, this is a safe and caring place to do it.
I live in Templeton, in the hills towards Cambria. My husband's favorite place is Edison Lake out of Fresno.
Near the coast is beautiful. I have fond memories of that area. Edison Lake is close to where we live, but difficult to get to. I've never been there, but all of the High Sierra lakes are pretty and I've been to a few.
The long, winding,bumpy road into Edison Lake is really something, but we have had some good times there. The water is so beautiful. I live in a pretty area too, so I can be a little less envious of you being in the Sierra's.
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