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Topic The Blame Game Go to previous topic Go to next topic Go to higher level

By bksquared On 2014.10.25 01:11
My husband can accept blame for nothing. Is it the PD? Some examples from today. Example:Tonight I walked into the bathroom and he forgot to flush the toilet. Gee you forgot to flush sent him into a rant. You never flush the toilet. I always need to flush it. In the good old days he might have said oops I forgot, can you do it. Or gosh I forgot. Example My camera is broken. Dummie me says what's wrong with it . He replies the sd card won't format. Why are you formatting, what do to you want to? He says erase the pics on it. My reply. Use the pc it is easier. His reply, No the camera is broken and you won't drive me to get it fixed. I take the card and 1-2-3 erase the pics. Then he is angry that I did it because he wanted some of them. UGH. I am continually blamed for all that goes wrong in his life and verbally ranted at You ....... If he needs help it must be immediately given. Or he screams at me you are always too busy to help me. Yes I am busy since I cook, bake gluten free breads, clean, do the yard work, fix any thing that breaks, make it possible to live in the house, be his chaperone at every (13) Doctor's appt, and drive him everywhere in addition to trying to fit in my own needs and life. He is always having a toddler trantrum. Raised fists and stomping. He is always yelling at me you did this or that. His whole sorry life is my fault. Anyone else dealing with this? Days, days, and days of this are unbearable. I am taking Xanax to keep me functioning. Is it PD or me?

By Dazedandconfuse On 2014.10.25 10:26
PD or not. You teach people how to treat you. I consider this emotional abuse. Perhaps you let this emotional abuse go in the past because of the disease but it's unacceptable. I would suggest you both go to counseling separately. He needs to deal with his anger and frustration at this disease without blaming you. And you need support. You also need to take breaks sometimes and do some things completely for yourself. Just my two cents.

By lurkingforacure On 2014.10.25 11:41
Ditto but I have read counseling may not work for PDers because they forget what was said:( If your guy isn't having that type of issue, maybe it would help.

In the meantime, and whether or not you all go to counseling, get someone to come in and help with him while you get a break away. Perhaps if he had to deal with someone else occasionally he may appreciate the loving wife you are a bit more.

We tend to lash out at those we love the most.

By LOHENGR1N On 2014.10.25 12:51
bk, Sorry for your problems. Is it P.D.? I would think it might be more of a drug side-effect. Has He started on any new drugs lately? Increased any? Is he taking agonists (Requip, Mirapex or the like? Even if he has been on these they could take time to accumulate in his system to a level of causing problems and we sometimes don't take them into consideration or think of them being the problem because they aren't a "new" addition. All of this can be so very hard to try and figure out.

Counseling can be tricky also, One really needs to find a counselor who has experience with PWP (this can be hard to find) Even a Caregiver going alone to counseling should seek out one who has dealt with P.D. before or is willing to put sometime in to learn of it's effects. Why I say this is because a counselor will approach the problems from the aspect they are used to say you're an apple the counselor is an apple but with P.D. that person is no longer an apple they are an orange and can't react or respond like and apple any more. So two apples expect reactions to problems to be met like an apple would BUT the orange reacts differently like an orange (the orange cannot help it it's now an orange and can only react like an orange) So it can in of itself be frustrating.

PWP only have so much dopamine left in our brain and some supplemented through medication. That's why we have increases in med's and other med's added in because over time our brain makes less and less dopamine and more has to be supplemented. Even so with supplemented dopamine it is limited. They say 80% of our dopamine producing cells are dead by the time symptoms are shown for diagnosis of P.D. We are at a 80% deficit in our dopamine levels when diagnosed and the disease keeps killing off these cells making our levels drop more as time goes on and we try to supplement them with medication. So it is a constant battle in our brain trying to shuffle dopamine around to complete circuits for functioning. This doesn't always run smoothly. Maybe thinking of an old movie will help me to explain it better. Those old movies with a telephone switchboard operators pulling plugs and wires from one hole sticking them into another hole to complete a call? Think our dopamine is those wires and plugs. Now the operator has the same amount of holes but fewer wires. Now inside our head the wire and plug and the little operator sitting there wires plugged into the holes for Us sitting reading everything is running right ...but ...we close the book the operator is alerted but what are we going to do ......Stand up!?!?! Oh boy! pull the plug and stick it in the hole for standing but this isn't smooth sh*t down we go in a heap because blood pressure didn't adapt quickly enough. Not enough wires...in a healthy switchboard the operator could plug in standing wire before pulling sitting wire and transition will go smooth, with P.D. limited wires for circuits we stumble, we tremor, we freeze, we fall limited wires. This can also happen with reactions to thought and speech not only movement. One may be buttering toast, wired to the task knife, bread, butter. Someone questions something or states something (and it does not have to be confrontational it can be completely innocent) the little operator says oops that calls for an answer I better pull this wire and plug it in there! Bang! We're not buttering toast we're in full blown answer mode! No time to adjust our voice or tone just blurting out an answer! We don't multi-task well we can't only as the disease progress less and less dopamine = less and less wires for the operator (our brain) to work with. We can't butter toast and listen we go from one to the other without time for our filters to work and assess how to answer.

These things aren't available to many patients and caregivers to read and learn or consider. Do they explain everything? No, some actions and reactions can be meant as mean and those shouldn't happen or be expected to happen but most are due to a lack of information available to patients, caregivers and the medical field and the separation that is put up between those involved. I'll get off my soap box for now I hope this helps someone somewhere, sometime. Take care, best of luck and hang in there.

By makrivah On 2014.10.26 00:01
Al, your analogy to the switchboard in excellent. I will be using it to explain what is happening to those who care about my PWP AND TO MY PWP. Thank you. Thank you. Thank you.

By bksquared On 2014.10.26 00:03
Thanks for everyone's input. He is seeing a behavior therapist. It is a slow process since his anxiety and stress levels were so high. We are both grieving for the expectations in life we have lost. Maybe I need to emphasize to her that his blame game is killing me. She should focus on coping techniques for him to accept that I am not the cause of his problems. I understand that he has difficulty, cognitive impairments have greatly changed his life. But this wicked witch is in the market looking for some flying monkeys. Again thanks to all for your advice.

By lurkingforacure On 2014.10.26 08:23
Thanks for that, Al. No wonder PWP get so anxious, too, trying to keep up with everything we don't even think about. I can actually see it in my husband's eyes when he is stressed or anxious and it breaks my heart. Wish I could just envelope him in a safe cocoon of a hug and protect him from everything.

By Dazedandconfuse On 2014.10.26 09:09
I too appreciate the switch analogy but there's a part of that reality that makes it even more difficult. Can I ask a question? Using your analogy that the PWP may not be able to control their tone or exactly what they answered to a caregiver....can they hear it? Can they hear that it sounds mean? Can they hear that they are blaming the caregiver? If they do, isn't it appropriate for them to apologize? If they don't hear it then it's simply going to be a sad and detached dynamic in order for both to survive this disease. I'm not trying to blame the PWP...I'm just trying to find a balance.

By LOHENGR1N On 2014.10.26 20:07
Dazed, good questions, I'll give you my take on them. But first both don't survive this disease. PWP do not survive We die. Sadly the medical field now for some reason doesn't acknowledge this most of the time they say a diagnosis you have Parkinson's Disease, the good news is it won't kill you. But I digress...

" Using your analogy that the PWP may not be able to control their tone or exactly what they answered to a caregiver....can they hear it? Can they hear that it sounds mean? Can they hear that they are blaming the caregiver? If they do, isn't it appropriate for them to apologize?" Using my analogy of sitting in a chair, when we try to stand sometimes we get the signal to stand but the signal (current) to activate the process doesn't get sent so We sit there frozen or may say I don't remember how to stand up! Now since we first learned to stand the movement became automatic (we did it without thinking about it) but now missing the signal we get stand up...we need verbal cues, lean forward, put your hands on the arm of the chair, push up with your legs as you push down on the arm of the chair and stand. So perhaps one can blurt out and answer or snap one out. (We have all I'm willing to wager at sometimes snapped a retort then later thought gee that sounded mean or that wasn't very nice and either apologized or thought next time I'll be nicer). Sometimes it can just be automatic and we don't pay attention to it. I can't say for sure.

You speak of finding a balance which is very necessary. In so doing both must concede if possible. Will the one wanting an apology be content with a word or two? or will they want a long explanation of the actions? As I said We PWP are operating on a dopamine deficit, coupled with medication that is mind altering. Should expectation be scaled back? I'm not saying let us get away with walking all over you or bad behavior. But I'm asking is it appropriate to expect a loved one with a brain disease that effects every phase of living one under mind altering drugs to act and function pre-disease? Should we scale back some of our expectations in allowing they are not the same person they were before being stricken? Should we hold them up to the same measuring stick we hold well, un-stricken healthy people to? These are not easy questions to find answers to. To find balance requires intensive scrutiny of expectations verses reality, hopes and dreams verses what is. It can be very personal scary. It's not easy finding balance scaling back expectations. Hopefully along this journey we can all find balance and help each other find balance. (here is hoping this posts I type for an hour before and when I tried to post it said refresh page and poof it was gone) take care, best of luck and hang in there, and be easy on yourself and each other

By HangingOn On 2014.11.02 10:11
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By carman96 On 2014.11.02 14:46
Al, guess what? Nobody gets out of this world alive. I'm not trying to downplay that yes, Parkinson's is a fatal disease. I feel terribly about what my husband is going through, and try my best to keep him healthy and safe.
That being said, Last week I thought I was having a heart attack or stroke or something. Sometimes it seems like the stress of doing everything is going to kill me sooner rather than later. I know my husband can't really control the things he says and does, so I try not to take it personally. And boy, does he do some whacky things.
I don't want thanks or apologies. Being the decision maker, Secretary, driver, banker, keeping track of pills and doctor appointments, gardener, and chief cook and bottle washer can be exhausting. Oh yeah, caregiver too! Even if I get someone in to help I feel guilty about leaving him and think I should be able to do it all. It's a no win situation for everyone.
I will be 63 next month and am relatively healthy. I really don't know how the caregivers who are dealing with health problems of their own do it.

By jcoff012 On 2014.11.02 17:33
Carman, as someone who is undergoing several months of treatments, I can attest that you are correct! I am worn out just from all of the doctor visits, constant blood tests, new meds, etc...and that's just for me! Lately, with my constant nausea and upset stomach from my new meds, not unlike daylong morning sickness (ugh), I am having less patience or even, less compassion for PD and for Carl. After all these years with cancer, then severe anemia,then side effects of meds, I am now trying to get my blood sugar and H1C under control...stress triggered it all, even after losing the weight last year! The glucophage is absolutely working...my blood sugar is down to 100..but the constant nausea and upset stomach are here in what seems unbearable sickness...

So, to answer your question...Until WE become so ill ourself, we are able to handle PD...at least, as well as we are trained...But, given that my own illness right now is fairly unpleasant, it is Carl who is worried about me, and it is he who wants to go with me to my doctors! Life isn't fair...he shouldn't worry about me at all...hopefully, this, too, shall pass...CVS pharmacy emergency line told me today to ramp up my caffeine intake and the symptoms should subside in this next week...Good news, as I have things to do daily to make sure about Carl and his PD journey...

I hope every caregiver out there takes care of themself...I am trying to get my health inline, so as to be able to adequately care for Carl...hoping the stress subsides along with better control...Hugs to all..Jane

By carman96 On 2014.11.02 19:24
Jane, I hope you are feeling better soon. What are you taking that caffeine would help the symptoms? Hope that works for you. Stress really does make everything worse!
We are in the process of buying a mobile home in the over 55 park in our town. I just cannot take care of 16 acres at the end of a dirt road. Especially in the snow.
Hopefully we get snow this winter, but higher up the mountain would be nice!
So living in town, a few houses from my sister, and a few blocks from the bank, grocery store, senior center, and our doctor sounds good. But so stressful buying a place. Luckily we can afford to not have to sell our house until spring. I'm hoping my husband can find some activities at the park or senior center or at least people to talk to.

By umajane On 2014.11.02 19:50
Carman, that will be so much easier for you I hope. The new place should relieve a lot of chores for you and hopefully make life a bit easier. Good Luck to you

By carman96 On 2014.11.02 21:20
Thank you umajane. That's what I'm hoping for. Easier and simpler.

By jcoff012 On 2014.11.02 21:54
Carman, I just watched a very poignant photographic story of a woman's fight with breast cancer...gave me pause...No more whining...if she can fight through chemo, I surely can do this...I have some of the minor side effects of the Glucophage...it could be MUCH worse....

As I have said before, Carl is usually very dear and compassionate, so, far be it from me to focus on myself...

I agree with Umajane...I am glad you have decided to downsize...we may do the same...this is a huge house for two people...be nice to only clean one bathroom, instead of four! I wanted a big house, but not without Carl...he mentioned the other day that we should talk about downsizing, too...always something...hugs...good luck!

By umajane On 2014.11.02 22:25
We downsized from a very large home to our present one. It seems too small 2 bedrooms, 2 baths....It is one story and easy to care for.
Now I want to add a bedroom in the event someday we will need a live in caregiver. Be sure you don't downsize too much....I'm worried about the stress of construction but want to avoid future nursing home situations which is not the way we want to live. Who knows what the future will bring...

By bksquared On 2014.11.03 00:12
Jane so sorry to hear of your health issues. Try taking meds with a pretzel or two. I find if the meds say empty stomach if mine is truly empty side effects and nausea ramp up. A pretzel absorbs the stomach acid while the pill dissolves. Carmen we downsized but still have issues. The bathroom shower can not fit a stool or seat when mobility becomes more limited. Grab bars by the toilets can not be retrofitted due to the design and an elongated toilet can not take a prefab seat and bar combo. When we get to that point there will be lots to deal with. I have already been consulting architects to have plans so construction can begin when modifications are necessary. Just one more task in a caregiver' s life.

By carman96 On 2014.11.03 10:41
Sorry to have taken this thread off topic. But it is all about us caregivers doing the best for our PWP without going completely insane!
Jane, you rarely whine or focus on yourself. You do need to think of yourself first right now. At our caregivers support group they use the old analogy, if you're on a plane and the oxygen masks deploy, put yours on first! You can't help anyone else if you can't breathe, right?
I did pick a house that has a step in shower with a built in seat, and did take into account future renovations that would include a wheelchair, etc.
Thanks for your support and suggestions.


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