For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Encountered a turning point Go to previous topic Go to next topic Go to higher level

By carefulcohen On 2012.03.14 21:38
This afternoon, after having a heart-to-heart with my daughter, I felt that I reached a turning point. A loss of resilience, a weakness, a conviction that I can't carry on as bravely and as noblely as I have been. So, I e-mailed my husband and asked him to find a friends house he can stay at for a few days, in case I 'crack up' when I come home after a 10 day vacation and 'throw him out.' I hate, hate, hate, the idea of throwing a hissy fit, but what alternative to I have? I can't live with someone who refuses to communicate with me. I can't over-look it anymore. (I've felt this way before: that I reached the end of my rope. We all have. But I don't know if I'll continue to be 'better than I actually am', or, whether I'll be a regular human being with human limitations...

By lurkingforacure On 2012.03.14 22:15
Everyone has a breaking point, and perhaps this will help your husband realize that you are on his side but just can't deal with him making you feel that you aren't. I hope things work out, in particular, that his doctor makes sure that he is not overmedicated and if so, titrates down and things improve for you.

By barb On 2012.03.15 08:12
I understand how you feel but be very careful about what you put in writing. I also understand he won't communicate with you in person. Still if your marriage can't be saved you don't want him to have a collection of emails.

By chroop67 On 2012.03.15 10:26
Its my understanding that your marital issues existed before diagnosis. If he didn't have PD would you stay or let him stay and continue to treat you this way? Disease does not excuse pre-existing behaviour. What about your life?

By carefulcohen On 2012.03.17 22:32
Barb, you're right. I shouldn't put anything in writing that could be used against me in a court of law. But, I still had to take that risk, to find out, if there is ANYbody there, even though he's not. all. there. I did get a e-mail reply. Whoopee! And, I replied to his reply. And, IF he replies to my reply...we might actually have a 'communication' going on. My reply to him mentioned that his withholding ( communication, information, etc.,) is ALSO a violation of boundaries. And I also need to feel safe. And I am also frightened. And I also deserve to be treated with consideration. Re: Pre-existing tensions in the marriage. His pre-PD quirks were always in the realm of 'normal'. It's normal for some guys to play their cards close to there chests, to sometimes blame wives, to be distant on occasion. There was always a benevolence, commitment, devotion and sense of humor there. The PD psychological 'change' was gradual. He was never bitter or surly before. At some point he lost his sense of humor. He was never 'unreachable' before. But this communication issue IS my breaking point, and I hope he'll assume the responsibility to communicate with me to SOME degree. It is heart-breaking and creepy to realize that these traits are the signs of schizophrenia: extreme isolation, paranoia, refusal to communicate, delusions, hallucinations (from PD meds-but, still)..oh, yeah, the best part. Being surly/bitter.

By drshepard On 2012.03.18 20:05
I can really relate to this discussion. My husband just went through a four month battle with psychosis. We tried everything from counter prescribing other drugs to lowering Requip and then doing away with it totally. After three calls to 911 for psychotic incidences or falls, I was at my wits end. My husband's family is very manipulative so when he tested me, I knew that I either be the stable piece or he would eat me alive. When manipulation didn't work, he upped the ante and took a day's worth of pills. That landed him in the hospital and then off to a rehabilitation center. The nasty, surly behavior was not something I had ever seen before. Thankfully, I got a wicked cold and couldn't visit and I stopped taking obsessive calls. That and his therapist telling him he was alienating people so an option he might look at was whether he would go to a nursing home and no one would visit, he came back to reality. I am really taking a time out. I am showing all signs of burnout so I am nurturing myself and awaiting the next round.

By parkinit On 2012.03.20 14:33
All of your comments just started me thinking about this horrible disease that is mental as well as physical. It is a disease of the mind, right? And we all acknowledge that some are affected more by the mental issues almost mores than the physical, right?

Why do doctors not prescribe a time in a mental institution? Why do they allow the spouse to suffer through dealing, mostly alone, mind you, with someone who has a disease that can emerge as full-blown schizophrenia?

If you are not dealing with a spouse who doesn't have severe mental issues, please don't respond. It's those who are dealing with obvious mental imbalances as well as the physical issues that I want to hear from. Your thoughts, my peers?

By chroop67 On 2012.03.20 15:17
My mom suffers from extreme delusions and often hallucinates. Nothing has helped, med changes, nothing. She is in a nursing home so I am not caregiving on a daily basis anymore but visiting her, talking on the phone is mentally exhausting and depressing as hell. It is the disease but i miss my mom and every conversation is a grueling reminder that she is gone. She has wid fantasies about getting better, going on trips, getting her own place.....etc. I just go along with them but I am screaming inside. We are actually moving away, this was a planned move years ago and a part of me is glad cause I won't live with the daily guilt of 'should I see her or not?' Chronic disease often steals not only the life of the inflicted but those who are the 'caregiver'.

By Jane On 2012.03.20 17:48
My spouse also has dellusions and hallucinations. This past weekend was just horrible. When in the middle of the night he is accusing me of getting together with the neighbor who is getting into the house through a secret trap door I try to stay calm and verbalize the reality. At the time it is scarey feeling his craziness. Now three days later I just don't want to be around him even though now he is able to recognize that he was hallucinating. I keep trying to repeat to myself that his behavior is the drugs not him, but am finding it so difficult to feel resolved about the incident.

By phoenix On 2012.03.20 22:21
It is a horrible disease. When my husband was first diagnosed 9 years ago, I thought he would just have a few tremors now and then. Nobody told us about the mental toll. The physical stuff is hard enough, but the personality changes are really tough. A few months ago it got to the point where one night he ranted on until 4 in the morning, when I had to take all the dishes out of the kitchen cupboards to show him I wasn't hiding any drugs. We cut down on Requip after that and the delusions and hallucinations are better, but still there, and the physical symptoms are way worse. I understand - it's so hard sometimes to recognize the person you married underneath it all.

By parkinit On 2012.03.21 13:47
I see what I now realize as OCD behavior and when I reread a psych evaluation, I noted a "checking" behavior mentioned, which, hey, is OCD!

My spouse used to be so kind, gentle, and loving. He has changed. He IS surly and hateful at times, and like many have mentioned here, he can be a doll in public, but even that is fading as the illness is taking more and more of a toll.

As others have mentioned, I can go to the doctor (which I did recently), for a potentially serious issue, yet when I come home, he doesn't always ask how it went. He may be in his room for hours and not engage in any conversation. He seems content with this. He seems to only want me around when he needs help. Where has the companionship gone?

I get tired of trying to constantly question his behavior:

1. Is it the pills?
2. Is it the disease?
2. Is he just "mad at the world" because of his condition, at times?
3. Does he just not care about others so much anymore because he is so OCD about his own issues?
4. Really, I'm constantly doing, doing, doing for him to make his life easier and he recently said he would give our marriage a "B?" Ouch. This one really hurt. Did he say this because of the disease or does he really think this?
5. Does he really think he can dance again (wheelchair bound), or is he completely delusional?
6. Is it the pills? etc., etc. etc.

The last question I ask myself is: "When do I get to say, 'I can't do this anymore,'" and what happens when I say that? I wonder if I truly do have to physically break down before I get that break.

Do we keep going on and on and on until we are physically incapable of caring for our loved ones? I'm in a position where I have to do lost of lifting for transferring and standing and getting out of bed. My shoulders are a bundle of knotted muscles now and I've recently started having muscle spasms in my back.

I've tried to help my spouse lose weight (with the sugar addiction, you all know how tough that is), and he lost a few pounds and then went to the store with me and we ended up with all kinds of sugary, high calorie stuff in our cart. He had lost 3 pounds before this - he gained it back, plus another two pounds. Please don't tell me not to take him to the grocery store. He falls when he is alone. He knows he shouldn't eat this stuff. I had eliminated chips and sweets from our home and now this.

It's all so darn frustrating!!

By LOHENGR1N On 2012.03.21 15:21
parkinit, I can feel your frustration in your posts. You are being stretched to the limit. And your are in the midst of a situation (I'll almost say too close to the situation) of no win. Standing back and reading the posts the abnormal behavior you're observing and contending with is frustrating, I don't know the answers for you. However being so close to this daily his abnormal is becoming normal for you both and what you are wishing for is a normal response to your problems of health a how are you doing and what did the doctor say? Unfortunately at the present time you're not going to get that. Along with everything else you have to do, you now have to say this is it I need help and start to find someone, a social worker, doctor or nurse, clergy to refer or point you toward someplace that can provide some respite for you. Adult daycare for while you're shopping, anything to give you a breather.

Describing his behavior he can't at present recognize you need the help or even "be there" like he used to be for you. It is up to you to make the move seeking some relief. If you can find even a few hours a week to get away it will help you and your outlook too.

I'm not going to color sunny phrases here or try to hand you rose colored glasses to wear, with a little help to relieve your load you'll start finding your own. A "B' grade for marriage isn't that bad really, I know it hurt seeing all the labor you've put into helping him and loving him as he is but if you can make the time and find some help perhaps that "B" for the marriage might be viewed as it would be an A+ if Parkinson's hadn't plopped itself right down in the middle of it? So my friend it's time to seek some help in caring for him so you don't become so down you're not any help to him or yourself, you know that. I wish you the best .....and because he can't say it right now I'll say it for him...You ARE doing a GREAT job! Thanks for being there! Take care, best of luck and hang in there.

By 2latesmart On 2012.05.01 19:58
I don't know what I would do if I couldn't read the posts here to know that I am soooo not alone in this. I am my husband's caregiver, and I work outside the home (finally went part-time because he needed more babysitting starting a few years ago). I do strenuous physical work at home because we can't afford help for everything that needs taking care of with a rental property and an aging house suffering deferred maintenance. I am totally in charge of all of his doctor's appointments because....hey, I just realized I don't need to explain all of this here, because you all do the same! You actually understand! I finally get to work after days at home, and I'm starting to relax into the day and he calls and tells me it hurts him to see me relate so well to others when I barely even speak to him (what others????? we haven't had friends in years!) and he worries about "how well" I know the men I work with (Like I'm fooling around on him - I should be so lucky!!). It's manipulative, to call me at work, the one place I still feel some sense of control and normalcy in my life, and then start bashing me with his problems. As someone here said, I spend so much energy trying to decipher, Is it him? Is it me? Is it PD? Is it PD medication? Is the dementia worsening?

I'm babbling. My point is that I, too, wonder when I'll break. I take a sick pleasure sometimes in the way my life is, because it's like an amazing lab experiment: how much can a person take? I'm 54, and have been coping with it for 9 years. How much longer can I live like this, and how will I break? A sudden, severe heart attack? A complete psychotic break? It's gotten so I'm wondering which of us will die first. Like a sick contest.

I hate going home, hate being home with him, hate being away from him because I worry. What a sad existence. I know enough to know that many have it worse than I do, and I should count my blessings instead of focusing on the negative. And knowing that I don't do that, and don't even have the energy to try to be positive, only makes me feel like I'm really a horrible person. Anyway, thank you all for understanding, and for being here for me and for all of us.

By LindaRhea On 2012.05.01 20:44
Thank you all for your comments. Even though I didn't post these feelings, I feel as if you were responding to me. I wake up crying in the morning because I know what the day will be like. I do everything I can for my husband and he still tells me I don't do anything for him because I'm not standing right beside him every minute and reading his mind. For example he says "You didn't bring me any tea." I remind him he didn't ask for any and he says I should have known he wanted some.

He never leaves the house. Even spent five days inside our motorhome when we went to visit my mother. I tell him about my physical problems and that I can't do everything for him anymore, and he shows no concern what so ever.

Today is our 48 anniversary, and quess what? Nothing!!! I still feel that I'm too young to give up everything, but other than leaving him, I have no choice. This "for better or for worse" is reaching my breaking point. What do we do when we reach the end of our rope? He totally refuses outside help, and I'm sinking fast.

At least with all of you, I feel connected and still alive! Thank you!!

By LOHENGR1N On 2012.05.01 23:41
LindaRhea, You posted on another thread about driving issues and stated although undiagnosed your Husband has Parkinson's Disease. Nothing is more scary than fear of the unknown, a trip to a Neurologist is badly needed. Although Parkinson's Disease has many unknowns with it like which symptoms and progression rates. We can at least help some with these and what to be on guard for. However without diagnosis He isn't getting any anti-Parkinson's medication, therapy or exercise. There are many beneficial drugs and diets along with exercise that can give you and your husband many years of quality life ahead. We have to be proactive and seek medical help for diagnosis. It sounds like normal reactions both of you are having but might be reacting to something that isn't there or that might be corrected with medication. Your sadness and worry need attention also as they point to depression. Which is also present with Parkinson's Disease both patient and caregiver. While there still is no cure for Parkinson's Disease, life expectancy and quality of that life is much better now than in years past. I cannot urge you enough to get your husband into the Doctors for a exam and referral to a Neurologist to rule out or confirm a diagnosis of your Husbands symptoms. We're here to help all we can. Take care, best of luck and hang in there!

By susger8 On 2012.05.02 07:28
2latesmart (love your username), just a word about your husband being suspicious. The PD meds might be contributing to some kind of paranoia. There are others here on the board whose husbands believe their wives have secret lovers -- seems to be a common type of delusion. For some reason many neurologists seem to be unaware of this. You might check with the neurologist about whether a change in meds might be warrented.

By the way, some PWPs experience compulsive behaviors related to the meds, especially Mirapex and Requip. This can take the form of compulsive shopping, looking at porn, gambling, all kinds of things. Keep an eye on your bank account and credit cards, because some people don't find out about this until the PWP has spent thousands of dollars.

This doesn't happen to everyone, by any means, but it's something to watch out for.


By Reflection On 2012.05.02 09:46
2latesmart - thank you. Thank you!
You made me laugh out loud, for real.
I so relate:

"Is it me? Is it PD? Is it PD medication? Is the dementia worsening? ...I'm babbling... I take a sick pleasure sometimes in the way my life is, because it's like an amazing lab experiment: how much can a person take? will I break? ... A complete psychotic break?

Been there. Done that. It's wonderful to laugh about it, and to know we have comrades. Thank you.

By 2latesmart On 2012.05.02 12:55
Thank you all for your responses and tips. It breaks my heart that we all have to go through this. But it helps so much to hear from everyone, and to know I'm not alone. And you do have to laugh some times - the latest tirade from my husband? This morning as I was getting ready to walk out the door for work after another night of four hours sleep, he offered this "advice": I'm not enthusiastic enough! Even in his confused mental state, he was shaken up by how long and loudly I laughed at that one!

By phoenix On 2012.05.02 22:03
Good for you to be able to laugh at that:) Love reading all your responses - when i signed up for better or worse, I had no idea this was the worse. But there's no leaving, just hanging in and hoping tomorrow will be a better day.

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by by people like you