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By LouisaMay On 2013.01.21 01:00
Hi, I've been lurking on this forum for a while, and have decided finally to say something because I'm at the end of my rope. I originally posted this on the young onset board, but was advised to move it here. My husband was diagnosed with cancer at 38, and got very sick. Then he beat the cancer, and got PD! He can't work. Everyone admires him for his courage, etc. But they don't see what I see -- the viciousness of his temper, his jealousy of my work and my life outside the house, his suspicions that if I come home late or have to work odd hours that I'm up to no good. I've given him absolutely no reason to suspect me (I'm too tired to have an affair!) -- he's just so insecure. I'm working like a dog in a difficult industry, trying to keep things together for our boys. He wants a lot of sex (I hear this is medication related) and often complains that I don't spend enough time with him. He doesn't seem to understand how exhausted I am. We've tried counseling, but his health is so variable that he couldn't keep appointments. He goes to individual counseling now -- but the main message he seems to get from it (that I hear) is that I'm not doing enough for him. I'm so angry and wish I could kick him out, but can't because he's sick. I still love him, and he does a ton of work around the house despite his physical difficulties. But sometimes he just acts like such a jerk. I feel like my world is getting narrower and narrower, and I can't see spending the rest of my life like this. My own therapist wants me to consider divorce. But I don't know how I can do that to someone who's so sick. I'm afraid I'm going to die of stress long before he dies of PD. Anyone feel like this -- how do you cope? I realize there are issues here beyond Parkinson's, but I think he may have kept them at bay if this hadn't happened to him.

By lpenrod50 On 2013.01.21 09:00
I know exactly how you feel My husband is the same way. There are times when I wish I could get in the car and just keep driving. I never seem to do enough for him. When he takes his medicine, and before it kicks in, his down time is horrible. He can't walk, it's hard for him to sit. I have to help him up out of his wheelchair and to walk. I have to rub his hands, his legs because they are numb. I take his shoes off when he sits down, put them back on when he stands. It's a never ending circle. I have someone sit with him now every day when I go to work which helps alot, but when I come home it starts all over again for me. It's nothing to get up during the night between 2-8 times. I'm exhausted when I go to work. We've been ordering food out more because it's hard to find time to cook when he's like this. I spend most of my evenings sitting with him rubbing his legs and hands. I've missed so much of our grandchildren's activities because he can't go and it's hard to leave him by himself on weekends or during the evenings. The only time I have alone is my 15 minute drive to work and back. This is really killing me. It's hard to even find something to laugh at any more. I just feel so down all the time. I Know it has to be hard for him. I love him but when he's so selfish, I really don't like him. It's nice to know there's others out there that are going through the same thing. I just wish I knew how to handle it all.

By lurkingforacure On 2013.01.21 09:07
We have all been there, you are not alone. If you've been a lurker, you know that you cannot take care of someone if you do not take care of yourself. This is what we all are told and know, first and foremost in this world of being a caregiver. You already realize things cannot keep going like they are, or you would not have posted....so, something has to change.

Several here have posted about having a no-holds-barred talk with their loved one. Sometimes it works! Maybe he does not really realize how stressed you are, or how tired you are. If he does, but doesn't care, that's one issue...but maybe he doesn't, and needs you to tell him. Bluntly, as in, I can't keep going on like this. If he realizes you are at the point where he may find himself out on his own, that may help.

On the flip side, the divorce rate with any chronic illness is extremely high. I wonder sometimes how many of those divorced couples would have stayed together but for the cancer, MS, PD, whatever. But people can only handle so much before they fall apart, and there is no way around it. Your husband may be in a place where he feels particularly resentful about getting hit with PD, and is taking it out on you, or he feels really crappy, and again, there you are. Again, bluntly talking to him may help.

I have young kids too and have had to make the hard decision that they are the priority and I have to give them as good a childhood as possible, given the PD in our lives. This has meant doing things without their father, hard as that is. He rarely goes to their events and has pretty much never driven them to a practice or activity even before the PD became a real issue. Forget about going to teacher's conferences or picking them up after school or even, coming up, going on the many out of town trips for school events because our kids are on school teams. I feel like a single mom and I hate it, but it is more important that I go and support them and let them have their activities than that we all sit at home. I just read a book called "What a Difference a Mom Makes" and it made me feel better about having to make some of these decisions.

One thing that may help guide you is to look into the future, and see what your life may be like when the children are grown and gone from the house. You, as caregiver, must have something outside of your PD world to sustain you. Once the kids are gone, what will that be?

I'm so glad you joined us, this is an incredibly caring and supporting group of people.

By jcoff012 On 2013.01.21 09:30
LouisaMay,

I am so sorry you are going through such hard times right now. I do agree that you need to make a life of your own, too.

One thing to consider...imagine going from cancer to PD...it must have been devastating to him. Not that gives him the right to be mean and cruel, but just imagine...I had uterine cancer and had three major surgeries and followup, only to come down with left leg lymphedema...it is painful and a constant reminder that I had cancer...and it is chronic...won't ever go away...So, in a small way, I understand going from one stupid disease to another life long, debilitating problem. However, I do not know what it must be like to have PD.

I would like to think that a talk would help, but it sounds like he is pretty selfish. Then, again, maybe he is clinically depressed. My suggestion would be to talk to the neuro and ask for something for depression. My MIL had a complete turn around after starting Lexapro...no more crying, no more anger...Not sure if this helps, but it's a thought.

Come on here when you can...I just went through a terrible week with my PWP, but the last two days are back to "normal"...

Watch the board, more people will post and help. You are not alone. Hugs, Jane

By chroop67 On 2013.01.21 12:58
Sounds like these are very difficult days for you. We all feel like we are expected to be heroes and put ourselves to the side and focus on the one who is ill. The problem with PD is that there are so many facets to it, physical, mental and emotional. My husband and I talk all the time about what we would do if one of us got sick, my mom has PD. We both agree that the others life must go on, not fair that two lives be lost. At some point long-term care has to factor into your decisions. I find that the mental deterioration is the most difficult part of this disease. Its leaves the PD'er unreasonable and w/o the ability to reason and they lose their grasp on reality. So often we excuse the behaviour because of the disease but the behaviour still exists with all its consequences and frustratons. And before I am told to look at it from the PD'ers perpspective, trust me I do. I did for my mom as long as I could, she is now in long-term care and has good and bad days there, just like at home. At least she is safe and in the 24 hour care of people who genuinely care for her. When my 'real' mom shows up she tells me how grateful she is for all that I have done and still do. When PD mom rants or is caught up in her delusions I listen and empathize but take it with a grain of salt. We can all 'cope' when these life changing diseases come into our lives but we owe to those affected and to ourselves and loved ones to live!

By LOHENGR1N On 2013.01.21 16:53
One thing I'd like to add about counseling and therapy, you have to find someone who is well versed in Parkinson's Disease and effects of the medications used to treat it. That will be very hard and if you can't you will need to find one Who has an open mind and willing to research those effects upon the Person and relationships involved. Don't just ask them and take their word check around. This is very important if they are to help you. I mean we still have Neurologists and Doctors out there who try to tell Us pain isn't related to Parkinson's Disease. So if some Neurologists don't know that how can one expect some therapists to know the subtle and not so subtle nuances of these med's in our brains. Take care, best of luck and hang in there.

By LouisaMay On 2013.01.21 17:41
Thanks to everyone for the responses. One of the problems we've had, and these posts point out, is that I feel cut off from his caregivers. He doesn't even have a full-time neurologist yet, just a GP and a pain guy. I haven't been able to talk to the GP for a while. We're working on getting a neurologist full-time, and I will ask about depression treatment. My husband keeps denying he has any emotional problems, but as I heard someone say once, emotional vampires can't see their own reflections in the mirror! I know it's very hard for him to have two diseases on top of another at such a young age.

By jcoff012 On 2013.01.21 18:39
Louisa, remember, take care of yourself, too...You deserve to be happy, too. Make sure you don't just eat, breathe and live PD.

Make sure you stay in touch. We all care about each other, even if we don't always agree, we know this is difficult for everyone, at every stage.

Hugs, Jane

By GladIhavehorses On 2013.01.22 00:46
Louisa I feel for you. My hubby also can be a real jerk but you know what, so can I. I went thru a period where I was not very nice to HIM. I lost my first husband at a very early age and was left with small children. I wasn't looking for another relationship because I was focusing on raising my children. By accident I met my current husband and felt I finally had a partner for life. Then at 60 my husband was dx with PD. I was angry and felt ripped off. I already had the hard ship of the lost of my first husband and I had to choose someone with this kind of future. I hated every new symptom of PD that showed up. I would point out to him every blunder or mood or lack of feeling ect... It wasn't until I joined this site that I realized that it wasn't his fault that all these things are happening to him. It's that dam Parkinsons. And it was cruel of me to point out how he was progressing when he didn't even notice.
I don't do that anymore. I just clean up, double check and assist when he needs me. I don't take for granted the things he does do because I know now there will come a time when I will have to make a decission to put him in a home.
And to those that their PWPD wants to much sex... I sorta wish I had that problem. His doesn't work any more.
I am not judgeing you, because I too at times feel like running. Instead I spend time with friends or with my horses and grown children. I would hate to be in my hubby's shoes. I would be angry a jerk and impossible to live with.
Take care of your self and make plans for your future and your family.

By CalDoc On 2013.01.22 17:36
Hello from a Bay Area Resident Med Student. I will be using this forum, and others, as part of my training to help PD and MS clients. The spousal frustration issue has been common in my work so far. If I may inquire of the original poster, can you define the details of your spouse's situation?

Common questions we use at intakes include

What are the limits of the PD person's activities?

What has the PD person lost in terms of occupation, activity, hobby, etc.

What, if anything, has replaced the lost facets of the PD person's life?

What role does the PD person play in the household or with dependent children? How has this changed since onset?

Does the caregiver spouse have any health or occupation issues that impact the caregiver role?

You mention "ton of work" Could you elaborate? For yourself or the PD spouse?

You mention "vampire" as a way of describing your PD spouse, can you elaborate and do you feel safe in your surroundings?

Thank you.

Calvin

By blue2 On 2013.01.22 17:48
CalDoc, So glad to see med profession training or caring about real day-to-day life for PWPs and their caregivers. Would you be interested in having other posters on this forum address the questions you pose to LouisaMay?

By CalDoc On 2013.01.22 18:10
Thank you. As a student, I wanted to "jump in" and this discussion caught my eye, but yes my questions are standard and I would welcome any and all responses. I hope to observe enough discussion that it may match the amount of study I am responsible for.

By LOHENGR1N On 2013.01.22 19:08
LouisaMay, First and foremost You and He have to get to a neurologist. A Gp diagnosing and treating Parkinson's isn't really a great way to go. The Neurologist can confirm or discount P.D. then determine a course of treatment. They are generally more current with medications and know more of the side-effects of those medications. Some adjustments to the medications might bring back function or reverse some of the behavior problems. Get a hold of his doctor and ask strongly for a referral to a Neurologist. There is no sense you and your loved one should go through these problems if some can be prevented by seeking a doctor trained in the field. Also there are many conditions that mimic PD and it takes a trained eye to sort them out. You mention a pain guy? If your husband has Parkinson's Disease does this pain guy know that most anti-pain medication esp. the stronger make Parkinson's disease symptoms worse? Does the Gp? If they don't them you can see how that can lead to a vicious circle of stronger pain medication leading to more or increased anti-Parkinson's medication leading to more and worsening side effects. You really must get these things straightened out start seeing a Neurologist as I fear both of you are needlessly suffering some problems right now. We're all here for You and Your Husband to help anyway we can. You said you posted because you felt you were being cut of from other caregivers and it sounds like your husband is being cut of from other People with Parkinson's and Neurological care. Stick with Us here and we'll hopefully get you straightened out. Take care, best of luck and hang in there.

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By Reflection On 2013.01.22 19:21
Dear Louisa May - I don't know you, don't know your husband. Yet - oh, how very familiar. So-with the benefit of hindsight:
It's not the PD. It's the Meds.
To elaborate - PD is bad, and coping with it is bad for anyone who has it and their loved ones. It kills neurons, and research has shown it's usually been killing neurons long before physical signs result in diagnosis. So there are very real, very difficult impacts from PD - physical, cognitive, behavioral, as well as the difficulty of coping with the limitations, the challenges, the scariness of the disease itself.
BUT - I sure wish I'd known when I was dealing with what you're dealing with - for us, a lot of the worst stuff we dealt with was NOT PD, but the results of over medication. Paranoia. Abusiveness. Impulse Control issues. Obsession with sex, and pornography. It's can be a bit like the "up" side of bipolar - grandiosity, mania, and emotional cluelessness. Kind of like the frontal lobes are disconnected.

When you're dealing with this, as well as the rest of your life, it's very, very hard to cope, and harder to know what to do. In theory, my husband had way better medical help than yours - a psychiatrist, and a movement disorder specialist. Amazingly, they did not recognize what I now know were classic signs of overmedication. Pressured speech (kind of like his voice is coming out of a firehose - fast, intense.) Jutting jaw, forward pugnatious lean. Walked like the energizer bunny (= your describing him doing lots of work around your house?).

If any of this sounds familiar - well, recognizing it is one step, but dealing with it can be quite hard.

Addicts will do anything to keep their supply. Dopamine is highly addictive. Now, our loved ones need dopamine to function, and there's no clear line between what's enough, what's too much. But what you are describing sure sounds to me like it's too much.

What can you do about it?
For one thing - set some boundaries. You do not have to take abuse. This is can be a long, brutal illness, and if you don't do this now, there's no way your marriage will, or should survive - because it will mean you will be destroyed. Next - do whatever it takes to get him on lower doses of medication. Write notes about his behavior, get them to his doctor a day or so before his next appointment, and explicitly say you think he is overmedicated.

If he ups his abuse - because that's what it is - be prepared to walk. Perhaps that will bring him to his senses. Perhaps not. You can't save him if he doesn't want to be saved. You can save yourself.
After many years of living through what you are living through, my husband is now on a much better drug regime, is taking no dopamine agonists, and his personality is far, far more "himself" than the scary, nasty stranger he became on those wretched drugs. PD is still there, and it sucks - but I am not living in fear anymore.

Good luck.

By Reflection On 2013.01.22 19:55
Further thoughts:
First: Sometimes we think we have to live with the abuse, even if we suspect it is caused by the meds, because our loved ones need those meds. Not so. Too much is bad physically - causes dyskinesias, etc.
I think of it like insulin - more is not better. The goal is to try to normalize dopamine levels, as much as possible - not too much, not to little. Because dopamine is addictive, tightly tied to pleasure/reward circuits, our loved ones tend to want more than may be good for them.

Second: some books that helped me get some perspective, some sanity:

Why Does He Do That?: Inside the Minds of Angry and Controlling Men [Paperback]
Lundy Bancroft (Author)
http://www.amazon.com/Why-Does-He-That-Controlling/dp/0425191656/ref=sr_1_1?ie=UTF8&qid=1358901818&sr=8-1&keywords=inside+the+minds+of+angry+and+controlling+men

Codependent No More & Beyond Codependency - Melody Beattie
http://www.amazon.com/Codependent-No-More-Beyond-Codependency/dp/1567312187/ref=sr_1_2?s=books&ie=UTF8&qid=1358901932&sr=1-2&keywords=melody+beattie+codependency

Neither is aimed at the spouse of a person with Parkinson's. Both address some of the difficulties you are facing, and may give helpful perspectives, help you understand what you are going through and find ways to deal better with it.

My apologies for being direct. You may find this off base, and if so, I'm sorry. I just don't want you, your husband, your family to go through what we did - because I strongly believe it is not necessary. Parkinson's is a lousy disease. It is difficult for all it touches. To add to these inherent difficulties the way too much Parkinson's medication makes our loved ones "jerks" - it's awful.

Med resident - if you are reading this, remember your oath to "first do no harm." Doctors want to help. They know there's little they can do for Parkinson's other than the motor symptoms, so they treat - sometimes, overtreat those symptoms, producing behavioral side effects that are far worse in the long run for the person with PD - because those side effects can strip him of his family. Please. Insist on talking to family members, even if the person with Parkinson's resists. Then, believe what they tell you.

By CalDoc On 2013.01.23 18:38
"Do no harm" One of the first things I say to myself each morning.

Thank you for your posting.

By parkinit On 2013.01.23 19:53
LouisaMay -

It sounds like you are seeking therapy, which is good and would be best if they were well-versed in PD, as Al indicated. Also, to relieve your stress, you DO need time for you. Every day. If your spouse demands more time and you don't have any time to give him, and in fact need more time, you need to tell him this - I need 15-30 minutes to myself each day to unwind and prepare myself. He should be happy to do this for YOU so you can be a better person for HIM. I would explain this (and have to my own spouse), that "I need my own time to be a better person for you." I've had to say that myself to my PWP several times, but in the end, and begrudgingly, he does get it.

If he feels he is not getting the care he needs or deserves, then the only other option is to find an assisted living place for him (with or without you) to live in. If you are the breadwinner, you need to definitely set some boundaries so you can do "all that you need to do" - even if this means him living elsewhere so he and you both get the care you need and deserve.

By phoenix On 2013.01.24 21:15
Hi LouisaMay,
I totally understand where you are. I've been going through much of the same thing. Most of the time I feel as if I'm married to someone I don't even know. I could cope with the physical stuff of PD, but the cognitive problems are so hard to deal with. Obviously, we all need time for ourselves, but how are you supposed to do that when your PWP needs have someone with him all the time. My husband can't use a tv remote, or a phone, obviously can't drive or go anywhere on his own, so I have to hope that friends or relatives will take him on for an hour or two. Today I toured a nursing home - it will be really tough financially, but was a lovely place and I actually thought that he would be better off there than with a wife who is totally exhausted and unhappy all the time. Sorry, just ranting but I know you who are reading this will understand.

By Trusting On 2013.01.24 21:28
I just want to tell you how sorry I am that you are going through this. Please try to find a way (get help from someone) to get away for even a day. Just for you time. I'm sure it won't be easy for you to do or you would have already done this already, but please try. Things always look and feel better when we have taken a little time for ourselves. Blessings and Prayers being sent your way.


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