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Topic Dismal future Go to previous topic Go to next topic Go to higher level

By justsad On 2012.08.08 21:56
This is my first post although I have read here for a long time. I think I have just reached the point, after many years dealing with PD, where this disease, and what it really means, has hit me. I see no hope for my future, or my spouse, or really, our family. What is there to go on for? Why bother? I'm not suicidal, please don't worry about that. I just am realizing that where we are right now is as good as it will ever be, and it is only going to get worse. We have already lost so much, and I know even more losses are on their way even as I type this. I know we must go one because really, what else is there to do? But the dismal future I see before me is, well, it leaves me completely empty.

If I could do all this caregiving, and still have my beloved spouse by my side, that would be one thing. But this disease is relentless. It will ultimately take him from me after dessimating both of us. In the meantime, we have to keep living the nightmare. I get so angry when I will try to rise above it all and do something really special, hoping it will make a difference, but it doesn't. And I am beyond tired of sex. I could truly care less, I am exhausted and every time I walk into our bedroom I am expected to caress and massage and more, and I am just so tired and sick of it. I am getting to the point where I don't even want to go into our bedroom. My spouse has gotten into porn as well and it's not enough that he watches it, he wants me to watch it because he's convinced if I do, then I'll get in the mood. Wrong on all counts. And of course it's my fault because apparently I'm frigid and not normal as apparently all women on planet Earth love porn and love to watch it with their partner. I don't even argue anymore, there's no point.

I know it is safe to vent here and thank you all for listening. I feel so empty and like I have nothing to offer. I know I am becoming a shell of my self, I can see it happening but am powerless to stop it. A dear online friend with PD just passed away, and I think this is what has jerked me into reality. Sometimes perhaps it is better to be ignorant.

By Trusting On 2012.08.08 22:16
I'm so sorry. I'm new to being a spouse of someone with Parkinsons and I just tell myself that we are on a road that we have never traveled before. We are both afraid of what is coming, however at this point I'm determined to live every day to it's fullest while I still can.

I am curious you and your partners age? How long has he had parkinsons? My husband has ED so sex hasn't been an issue. Is it the meds that are causing him to want more porn and sex? I haven't had to face this and can't imagine the pain it must cause.

I am so happy that I found this site.

By whyhim69 On 2012.08.09 03:31
In responce to justsad..........I wish I had words of wisdom and to tell you that things will get better but I can't say that........Because I am also new to the Piss pour life of being a CG. There are so many times I wish it was the other way and I had PD. I think I could handle having it easier than taking care of someone that does not communicate and explain how they are feeling! Is it the PD talking or is it our husbands? Is it a man thing? I wish I new the answer. I just had a disagreement with my husband tonight about him not having any motivation, interest, apathy in anything. Somehow he managed to turn the conversation around and state that I am talking down to him and I do NOT know how he feels. He is right on the fact that I do not know how he feels because he will NOT tell me! When he first was diagnosed I used to ask him everyday how he felt, how he slept, etc and one day he said me asking him bothered him so we decided he would tell me how he felt, etc...That was a year ago and I still dont know how he feels everyday because he doesnt tell me. Should I start asking again? Who knows? I hate what this disease does to a marriage. Its hard enough when things are going well, after 27 years u would think this would be a bump in the road but its more like a sink hole!!! I used to say we never know what is around the next corner so enjoy... I now say we better look around first!

By Reflection On 2012.08.09 10:32
I wish I could find the right words to reach you, because I have been where you are., in despair. I believe that things can be, will be much better for you, for your husband.
The sex/insensitivity/lack of empathy/hostility.
This is too much dopamine. I am certain of that. Been there, done that.
And if your husband reduces dopamine, the out-of-control, compulsive porn/sexuality, which dehumanizes him, and you, will go away. Really. I promise.

I think I wrote about my husband, after he got off massive doses of Requip, (a dopamine agonist, similar to Mirapex, or Neupro-but dopamine dysregulation syndrome can also be caused by too much dopamine from other sources, like sinemet, etc.)
“He’s not the man he was, but he’s a hell of a lot closer. “

Now – how to get there from where you are, and that’s hard.

First, you have to be willing to set some boundaries. I didn’t even know what that meant when I started. So I read a classic, Melody Beaty’s Codependent No More & Beyond Codependency (under $5 used at Amazon)
http://www.amazon.com/Codependent-No-More-Beyond-Codependency/dp/1567312187/ref=sr_1_6?ie=UTF8&qid=1344520182&sr=8-6&keywords=melody+codependent
When I read it, I though – no, this is all wrong. If you love someone, you must be willing to sacrifice yourself, everything for them.

And boy, was I wrong, Because that just mean that my loved one with Parkinson’s, and I, and our poor kids, spiraled ever deeper into his addiction – because that’s what too much dopamine is, an addiction.

I reread that book several times, over months, years. And each time, I understood a bit more – that I was NOT helping him by helping him be, well, dysfunctional.

Long story – but I see it all much more clearly now. There are a lot of elements to that, but one crucial one was slowly emerging from my own depression. I’d spent years there, it seemed “normal.” And it is normal to be depressed, deeply depressed, living with what you’re living with. But – you can emerge. Walk, outside, in sunlight, even if you don’t feel like it. Maybe even a couple of times a day. It may help, and you don’t have to believe it’ll help for it to help.

You have to communicate with his doctor, and let the doctor know about his porn addiction and compulsive sexuality – and don’t pull any punches. Be clear. Be factual, but don’t minimize it – it’s bad.

Consider what’s the best way – maybe a letter, hand delivered, before his next appointment – and make that appointment soon.

My husband refused to let me go with him to doctors appointments – he loved his dopamine, and he was not going to let me get between him & that dopamine. To try to keep the peace (and he had become, on too much dopamine, hostile and abusive), I went along wth this . Big mistake. The HIPPA rules in the US mean that your husband’s doctor can’t communicate with you without his permission – but he legally can, ALWAYS, take information from you. And should. If you don’t tell him, the misery you’re living with will go on and on, and sap more and more of your strength, and what’s left of your marriage. Your husband may well react badly, and if you can hide that you’re the reason his doctor is cutting down on his dopamine supply, you may want to – you’ve had enough abuse. But you have to do it, even if it precipitates a crisis.

Because – you are living in a crisis. This is unsustainable. Parkinson’s can go on a long, long time – my husband was where yours is now ~ 2000, when he first went on requip, through 2009. And, while Parkinson’s progresses, he is honestly in some ways better now than when he was on requip.

This is all horribly hard. And by setting a boundary, by saying you won’t live like this, by insisting on your right to communicate with his doctors, you may make things worse (hard to imagine –your situation sounds pretty bleak) in the short run. But if you don’t, you, your husband, your relation will continue to get worse and worse.

Now, Parkinson’s continues to get worse. Cognitive impairment, bad judgment, etc. etc. as well as the physical issues still progress, and it is sad, and difficult. But for me, far less difficult than when the sweet, gentle guy I married turned into – there’s no other way to communicate this – a crack addict – violent, abusive, hypersexual, hairtrigger – because of too much dopamine. That was horrible, and scary, and if I had to do over again, I would realize that I’m not helping him, and was destroying myself by living with it.

Without your clear input to his doctor, your situation is not likely to change (unless you move out.) Doctors get from pharmaceutical reps a rose-colored view of drugs. We see the evil side of them, and we must advocate for our loved ones, and ourselves. You may be told that if his dopamine is reduced, his mobility may be hurt. In my experience, not so – or at least, not exactly. The analogy I’d draw is that dopamine is like insulin – too much insulin is as bad as too little. There is a difference – dopamine, unlike insulin, is highly addictive, so our loved ones may resist getting their supply cut. But you have to do it, for him, for you.

Sorry if I’ve sounded like a nut case. I’ve been where you are, and I don’t want anyone to go through what I went through. One of the worst parts is that in retrospect, it was unnecessary. The hell wasn’t Parkinson’s, though it was and is bad enough – it was overmedication. I believe you can make it better. It won’t be easy, and when you’re depressed, living in the middle of a horrible nightmare, it’s very hard to summon the energy, the will, the drive to do what you have to do to make it better. I hope you do. I’ll be cheering for you. I know you can do it.

By justsad On 2012.08.09 14:10
We are not dealing with too much dopamine issues, he only takes seven a day. And has never taken Requip. I go to all the doctor's appts too, so that is not it. No, my issue is that I am just realizing what the future really means, and it sucks. I have been in denial for many years, I guess, hoping, like everyone else, that some new treatment or even a cure might come along. All we have to look forward to are more meds, variations of the same levodopa/on-off/dyskenisia theme, which will cause side effects on top of side effects as the drugs interact with each other and an ever-changing body. More loss of function, more loss of personality, more dependent, you all know it too well. I used to be a pretty positive person but there is no way around what this disease does to everyone involved. And that is what I am having to face.

And deal with. It is one thing to know what may lie ahead, but quite another to actually experience your spouse's immobility, sloppiness, apathy, fill in the blank. The aftermath of a middle-of-the-night food orgy is a sight to behold when you stumble into the kitchen first thing in the morning to make coffee, by way of example. The bathroom arena is another, as several here have shared. And I hate our bedroom now.

I know most everyone's loved one is a wonderful person trapped inside their body, which only makes it harder. Not one person with PD would ever in a million years choose to live as they are forced to live. But they are stuck, as we are, and when I realize that and what it really means on a daily, hourly basis, it is dismal indeed.

By parkinit On 2012.08.14 21:55
I understand "the hope" and I just realized the past few weeks, I'm over it. Over hoping for that miracle or whatever from the vast assortment of folks who are more than willing to make the claim, take your money, and give you something in return, promising to "cure all" when nothing happens. More water, coconut oil, etc., etc., the list and the promises accumulate, but my beloved is the same. A nutritionist stopped by today who had recommended juicing and more water in the past (neither helped), and is now touting the benefits of coconut oil.

I'm tired of the promises and jumping on all these "trains." I've accepted that it is a progressive disease and the outlook is dismal. Sometimes facing the truth is the best gift we can give ourselves.

By lurkingforacure On 2012.08.14 22:28
Parkinit,

We did the coconut oil and it did not help us, but I have read of other PWP who it has helped. That is the problem, I see, is that PD is so very individual. Something that helps one PWP may not help another, or as much. We just have to try things and see what helps our loved one individually and go from there.

One thing about the oil: it did really help with constipation! That in and of itself was a big blessing :)

By LOHENGR1N On 2012.08.14 23:38
Parkinit, I hear you, I know a lot of people consider me a "killjoy" warning of promises as a sham and lurking yes it seems some benefit from some of the things for awhile. That in itself makes me wonder if it is "the placebo effect" at work? The puzzle of this disease just seems to deepen as it progresses.

By jcoff012 On 2012.08.14 23:43
May I inject something?

I spent five years, going on six, fighting uterine cancer and just this February was told I had "no evidence of disease", but it left me with a left leg two sizes too big, which can make me gain five pounds in one day (lymph fluid). *I* am not the woman my husband married...during all of the treatments and surgeries, I lost about half my hair, had to have a lot of dental treatment because of severe anemia, had to go to endless therapies for my swollen leg, etc...

Why am I telling you all this? Because I know you all feel like your life is over and/or are in a seriously terrible non-future...and, in many ways, I see it happening to us...However, this man whom I married slept in hospital chairs and helped me go to the bathroom, would come home at lunch to see if I was ok and make me lunch, gave up several trips because I have trouble flying now because of swelling...and now it's my turn to be there for him...

I hate this disease, too...we are just beginning the journey, but he is already having major problems. But, I love him and cannot imagine my life without him...so, I guess what I need to share with you is that I want my husband back...but, that person is leaving me through no fault of his own...and, with that said, I won't leave him...

We have been married 45 years, since we were 18, so my devotion to him is paramount in this battle...and I owe it not only to him, but to myself, to be there for him. I hope you all feel that way, too...and are going through a low period...

Please know I mean no disrespect nor am I in any way being critical. Many of you are much further along this path and I realize one becomes weary. Tonight is a good night...and was a good day, so I wanted to let you know of good times, even in the face of the certainty of his awful disease.

I wish for you all much peace, happiness, and some laughter amid the tears. No one knows what this disease is like until it hits you head on. (Sadly, we watched my husband's Mom go through all of this for 22 years, so we know the reality of it all.)

I am so glad this board exists. Keep posting.
Hugs to all of you along the way. Jane


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