For those who care for someone with Parkinson's disease
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Happy New Year I was hoping this new year might bring some positive changes in this arena, and I know it's only January 9, but so far, not so good. We have been grappling with my husband refusing to wear any kind of assistance in the underwear department for awhile now, and this morning I got a real eyeful. For those that find this sort of topic unpleasant, you may want to skip this post! I walked into the living room this morning to find my husband on his hands and knees in the hallway, buck naked, with a plastic shoe box-sized container between his feet on the floor. He was actively pooping in the plastic box. The commode is literally less than six feet from where he was. I could not believe it. I told him I was not cleaning his mess up. He said he would clean it up. I made the kids breakfast and lunch, and drove to school for dropoff and then work. I came home at noon, and the house smelled horribly like poop. I asked him if he cleaned his accident up and he said yes. No way, not with that smell, so I looked in the bathroom, and there was the box, with one turd in it, lying on the bathroom floor. All he had done was slide the poop box from the hallway to the bathroom, maybe 6 or so feet. I took the box outside and told him he needed to clean it out or throw it away, preferably the latter. I knew there was more poop than what was in the box, so looked around the house to find it. I found a large turd in the dog bed, with the dog licking on it. I went nuts. I told him that I was going to begin photographing his accidents and show them to his doctor. He asked me why I would do that, and I said because I need help to get you to wear something, anything, so these types of accidents all over the house don't keep happening. Keep in mind that I have a bedside commode right next to his bed that he refuses to use as well. No one I know or have read about has this issue. No one. I don't know if my husband is taking some kind of perverse pleasure out of making me clean up his crap, because he knows that I cannot stand the smell or mess and will clean it up, or what the issue is. He was in a much better mood than normal after I cleaned it up, which only made me madder and wondering what the heck is going on here. I wonder what would happen if I took the kids away for the weekend and left him at home by himself-would he live in his filth or clean things up? I can't take this and the kids are both horrified and disgusted. How can I get him to wear something to help in this department? I've had the stern talk Jane suggested, I've calmly explained that any assisted living facility would require him to wear them, as well as outside help in our home. It's like exercise: I've asked, begged, pleaded, cried, yelled, but he simply won't do it. But unlike not exercising, his pooping on the floors, smearing it on the walls and counters, tracking it from one room to another with his feet, is directly affecting the entire family and jeopardizing our health. I know it's only a matter of time before one of us (or all) get e coli or some horrible germ from something he's touched that we can't see. I actually thought of putting the turds in his bed, like you do with little kids who leave out their toys so they have to put them away, but honestly think he would leave them there and sleep on the sofa. Plus the smell would drive me nuts. Any ideas? |
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This is rapidly sounding like a mental health issue! You have gone further than anyone I know would. Unless I am wrong, Al or anyone who has dealt with PD longer, isn't it time for her to be blunt with his neuro AND get in touch with a mental health physician? No one should live like this. I, for one, will tolerate a lot, but NOT if it affects my children or their health. If she has reached her limit there HAS to be some recourse. |
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| I really don't know what the issue is here. If I remember right years ago shortly after diagnosis and joining the forum. Way back before telling the children didn't he come home and go into the bedroom and listen to his music for a hour or two to unwind. Didn't mix with the family in family things? Maybe he has established a pattern of doing what he wants and that's it? I don't know. I do think it is time to bring it to his neurologist and if the neurologist will give you a couple of minutes to talk privately you might have to ask the neurologist to bring up a nursing home if he continues to do this. I know it sounds harsh but it might shock him into behaving. (if it's not wholly a mental health issue) Just a suggestion to run by his Neurologist. Good luck and plaese keep us posted. |
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Enough. Even if you can tolerate it, your children should not. They are not learning tolerance or compassion. They are getting a false impression that a long term disability is disgusting. And what about their social lives? They can never have friends over in that environment. Your husband needs help. So do you. Most importantly, so do your children. |
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Dear Lurking. Please.. for your own sanity. Don't threaten to call the neuro.. just do it! immediately. No-one could expect you to live like this. |
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Lurking, please talk to the neurologist about this. There will be a solution. Don't go on like this. There is no shame in asking for help. When I first had sensitive issues about my husbands behavior, and didn't want to bring it up in front of him, I wrote the issues on paper beforehand and handed it to the neuro when we got there. Of course we discussed it openly but at least I didn't have to bring it up. Or make a phone call and talk to the neuro about it. Just do it please for all of your sakes, HUGS and prayers to you. |
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Dearest Lurking, No one should have to live with this. If nothing else, the loss of your husband's dignity and his relationship with and respect from his children should trigger your seeking help for him. It seems to be very hard for you to reach out for help in what, from the outside, seems a very extreme situation. I did a little bit of online research. Fecal smearing, and indifference to it, is sometimes a sign of a serious neurological impairment beyond Parkinson's. His doctor needs to know about this symptom. HIPPA stops the doctor from telling you about his treatment (unless you have a signed consent). But HIPPA does not stop the doctor from receiving information from you. I wonder -- can you tell yourself what stops you from informing your husband's neurologist about this symptom? We are worried about you and your children, and your husband as well. |
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Lurking, you seem to be still wondering whether your husband's behavior is intentionally difficult. I assure you, this behavior is persistent and bizarre enough to be far, far beyond what is likely to be intentional. You have documented many incidents, over a significant length of time, to point strongly to significant mental dysfunction. As others have mentioned, beyond Parkinson's-related dementias there can be many causes of mental dysfunction besides Parkinson's, although Parkinson's can make any of them worse. There is (unfortunately) no rule that says that having Parkinson's exempts you from having any other mental or physical issue. Having worked with dementia patients, family and loved ones often come in with the question, "How can I get my loved one to understand that...." I truly, strongly encourage them to give up that line of reasoning. There is no magic combination of words, threats, bribes or other that can help a brain understand when it does not have the capacity to do so, any more than we would expect to find a way to make a small child "understand" that bedtime is important for health and mood, and that therefore based on logic they should go to bed calmly and without question. That will just never happen, and holding on to the expectation that it will is only an exercise in frustration. If there were such a way, my guess is you would have found it by now, as you have tried many different approaches, for a long time, with great patience. Instead, the question to consider is, "how can I best help a person who is incapable of understanding that.....?" That would include reaching out for all the help you can, including from the neurologist. Your husband is depending on you to make this logical decision, since he is sadly unable to make it himself. Sending you all the love and light possible, and ((hugs)). |
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I agree that it's some kind of dementia and he doesn't realize what he is doing to you and your family. My husband is in his 10th year of PD and a year and a half ago he started having hallucinations and mixing up day with night and I wasn't getting much sleep and him neither. The doctor said it was a form of dementia and started on a medication to help him sleep which is working most of the time. Look up the signs of dementia on the internet. If you yell and do the things you are doing to make him clean up his mess isn't going to help. They get defensive and don't act the same as they would normally. If I say anything negative to my spouse he gets upset and calls me names which isn't like him. He is a gentle man, and this dementia has changed his personality as certain times. Most of the time he is ok, but I have timeS which are difficult. I help my husband dress and shower and get his meals and do everything else in the house as he gets mixed up. It is tough seeing him this way. He also has problems expressing himself which is very frustrating for him and for me to know what he needs or wants to tell me. As for the bowls, the PWP don't have the same control over their bowls and when my spouse has to go, it comes pretty quick. We haven't gotten to the point of using Depends, but I keep my fingers crossed when travelling very far for a doctor's appointment for example. I take a change of clothes and try to eat in a places where I can help him in the bathroom as he has problems with his pants due to the strength in his arms. This darn disease takes so many things away from a person. I don't know at this point what to tell you how to approach this problem but there must be some outside help that could give you better advise. The last person's advice is very good, and I hope you can get help soon. You aren't alone in this journey and I feel for you and your problems. No two people are the same with his disease but we try to help each other in this forum. You have to have a lot of patience with a person with dementia and I know just having PD is enough to handle when it progresses. Take care. LYNNIE |
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Sage advice from others on this forum. I can add nothing to what has already been said and recommended. I do prepare a typed list of concerns and questions before seeing his doctors. I give it to the doctor as he enters the room. That seems to work. It gets everything on the table for discussion and help. God bless you for your patience, but "enough!" I know I could not have tolerated what you have. My thoughts are with you for a quick and permanent resolution. |
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The advice from junipersage is spot on and beautifully simple. I add my voice to this suggestion, as I think we have discussed intent vs mental capability before. But this issue, as well as the violent outbursts, is truly a whole field of red flags. Please get help. If this neuro doesn't help, persist in finding someone who will. Your family will thank you, and you will be doing the most loving thing for him you can - getting him the proper help. Also remember that cognitive function in one area doesn't mean he's perfectly sound in all. Even if he makes sense sometimes, you have plenty of examples that it's not always that way. I feel you. You want to believe this is ok and normal and just him being obstinate. But like an intervention, with as much love and gentleness as we can muster, we are telling you it's not. You know in your heart it's not. We are all here for you. |
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Dear lfac, your concern about infection is valid. Common bacteria can infiltrate blood and urine and cause a life-threatening systemic reaction. My Dad (who is very careful about hygiene) suddenly had a massive infection the summer before last... sepsis & hospitalization followed by many weeks in a nursing home. Hoping you and your loved ones will not have to go through that ordeal. My thoughts and prayers for the well-being of your family are joined with many others here. |
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Thanks all, so much, for the support and advice. I am always surprised at the wealth of perspectives from everyone here, and you offer such sage and caring advice. I am so very grateful. I don't know that cognitive issues are the primary issue here, though. I almost wish they were, as that might be easier. We certainly have cognitive issues now, and yes, you could argue it is crazy to not wear a pad/diaper to prevent accidents, or to clean up your accidents when they occur, but I really do believe it is an aware and conscious decision to refuse towear pads and clean up his messes, that is the deal. Whether he won't wear them and clean up so that I have to, or he won't wear and clean because he thinks it's beneath him, he just doesn't want to, a combination of these or even some other reason, doesn't really matter. He is capable, he knows it would help so much, but won't. And that is what is so frustrating. Why do I believe this? Just today, I told my husband that his sister was coming over this weekend and that he needed to clean up the toothpaste spit he spat all over the bathroom mirror or else she might think he was messy. I have been asking him to clean this off for over a week. Guess what? He cleaned that right up. I didn't even have to ask twice. You can imagine how I felt, especially after the horrible poop incident this week. I know that our PWP put their best faces on when around others, but doing that is a conscious decision. The PWP must be thinking "I don't want Doctor/Sister/Friend to think I'm a pig, so I better clean that up". It seems like my husband's desire to not wear a pad/diaper or clean up his accidents is more important to him than helping me. He is actively weighing those two motivations every time he has an accident and I remind him how helpful it would be for me if he would just wear a pad and clean up the mess. That seems to be an aware and deliberate decision rather than behaviour attributable to cognitive issues. And deliberately refusing to help is a different situation than not understanding that helping is the right thing to do because of cognitive issues. I'm not explaining this very well but it seems like they are different situations. In the former, my husband could set aside his selfishness and help me because he does that for other people: in the latter, he is like a child who cannot do that. I'm interested if anyone sees this as I do or whether you all think I'm losing my mind
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I'm not sure why you're not discussing this behavior with the neurologist?? This is not normal behavior. I was told by our neurologist that there are many kinds of strange behaviors that may occur with Parkinsons and from the meds and that he should be told asap if anything strange should happen. You really don't know if this is a result of the meds but the neurologist certainly has the experience and knowledge of how many different behaviors can occur. I'm certain the neurologist has seen this before and can help you figure out how to handle it. Please for your own sanity, and your childrens, discuss this on the phone with the neurologist if you don't want your husband to know. Sending you courage and hugs. |
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I'll admit, I find it very, very hard to see what you've described as being deliberate. But I am not there, and you are. So a couple of other suggestions: at one point you wondered what would happen if you left your husband alone for the weekend, if he would clean up after himself. Is there any way you could do that, possibly even for a bit longer, and then evaluate how he does? If he is not able to be left alone, could someone (like his sister) come and stay with him for a week or so, and then let you know how it went? It would be helpful to have an objective observer to be another set of eyes here, and I'm sure you and the kids could use a break. You wouldn't even need to go far - perhaps there is a friend you could stay with, or even a hotel, right in town? Is there someone you can confide in that can be a direct observer and help give you perspective? I don't think it serves anyone's interest to keep this behavior quiet to avoid embarrassment. The medical team and/or a medical social worker, if you have access to one, could also serve in this role. The situation you describe just isn't working, not for anybody. To me, it seems like there are only three reasonable paths forward: one, you could confirm there are serious issues of disordered thinking, and together with his doctors you find new medications that help control this. Two, you confirm there are cognitive issues, but medication does not help or your husband refuses to take it. In this case, it may be time for assisted living - his needs may be beyond what you are able to provide. Or three, you are able to eliminate cognitive issues entirely and what you are left with is simply psychological abuse. In that case, it is time, and past time, to leave, for your own sake and your kids. You may see it differently. Can you say a little more about what you see as the most likely future for all of you? If you believe this is deliberate, and you have plenty of evidence that he is not going to change, and you plan to stay on regardless, how do you see this ultimately playing out? Whatever you decide, I am sending my most supportive thoughts to you. |
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Lurking, it is time to call the neurologist. No one wants to tell "family secrets" to the world, but you are NOT doing so by explaining to the doctor. That is why we have doctors...to help. But, unless you honestly tell him/her, they can do nothing. When I went to my primary care yesterday for my A1C checkup, it was MUCH higher than it has been in the last three years. I broke down in her office, told her what has been going on with our daughter's divorce, not seeing our grandson after being his caregiver for six years, and watching Carl beginning to deteriorate because of his PD...Know what she did? She let me cry, handed me a tissue, then spent 45 minutes offering an ear and making suggestions on ways to handle stress. She even has set up an appointment for me with a counselor to "talk". Her "take" was that *my* health was being affected very adversely by my family situation. "It is cliche, but true. You cannot help others if you don't take care of you first." Then, she said, "One of the hardest things to do is admit there is a problem, but once you do, you WILL find help...both physically and mentally." I offer that advice to you. PLEASE get help. Take care of yourself and your children. In your heart you know this situation cannot continue. Let others help him so you can help yourself. I want you to sleep well...I did last night, and my blood sugar was the lowest it has been in over a year...relieving stress helps! Try it. You have nothing to lose, everything to gain, and peace for your family. There is no shame in asking for help. Good luck! |
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Dear lurking, I have been thinking of you and your family a lot over the last week. If his sister is coming this weekend and she has that much influence over your hubbie, would be be possible to confide in her and ask for her help and maybe intervention with this problem? I know that you probably don't want to let the side down, but I think it has gone far and beyond the point of simple embarrassment. Otherwise, if that is not possible, I would agree with the others in discussing your concerns with his neuro. Remember that, no matter what you tell him, it probably won't shock him. No doubt he will have come across even stranger behaviours during the course of his career. Please let us know how things are going. Wishing some improvements for you soon. |
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I let his neuro know we were having problems in this department in a letter when we visited last month. The PA we saw didn't address them during the appointment, perhaps because she didn't want my husband to know I had written the letter. I thought it odd that it wasn't mentioned, but couldn't very well blurt out right in front of my husband "what about those toileting issues I mentioned in my letter....". I have been discussing some of our issues with my husband's sister lately, so she is aware of the depends/poop issues and the incident at Thanksgiving. She is frustrated for me, but doesn't have any answers either. I think my husband would have promptly cleaned his toothpaste spit off the mirror whether he knew it was his sister, brother, mother, or friend coming over. This morning he showered without even being asked, dressed in his jeans, which he never wears because they are hard to get on, got his socks and shoes on...his brother was coming by to borrow a tool. I plan to call the neuro Monday and see what they recommend. Hopefully they will have dealt with this before, and have some suggestions. |
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| Lurking, I'm glad you're going to follow up with the neuro. Don't be embarrassed to go into details so he knows just how bad this has become. He needs to know you need a solution immediately. Sending you big hugs. |
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Lurking, You have been on my mind a lot lately. Your situation just seems so incredibly difficult. There must be a very good reason for continuing to hope that your husband will have a change of heart and treat you and your children in the best way he can, instead of the worst. Two things keep coming to mind. One is that I hope you are documenting this behavior--keeping dated notes and descriptions and making photos (if you can keep them secure -- a password protected file on your computer, or a cheap digital phone you can keep private). You might never want to use such images, but, on the other hand you MAY need to document that this unsanitary and disrespectful behavior has been going on for a very long time. It may come down to your word against his, if you don't have pictures and contemporaneous notes. Second. I wondered if his behavior is not an usual presentation of the dopamine agonist behavior that so many of us have faced. His fecal smearing and public defecation is in some ways similar to compulsive sex-seeking on the internet, or shopping or gambling. It is a repeated and almost compulsive behavior, with his ability to hide it when he feels he must, his lack of insight into its inappropriateness and his indifference to its destructive effect on people who are working hard to continue to love him. If your husband is taking a dopamine agonist it might be contributing to this problem. Hugs and warm thoughts, VV |
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I am an optimist, so it's hard for me to give up hope that my husband will help us help him. He keeps telling me that he will wear the depends but he never does. I wish I could blame this behaviour on the agonist we take, but so many, if not all, of our family issues pre-date the PD. The PD just makes everything so much harder. This morning around 5am my husband was yelling for me and when I ran into his room, there he was, lying in a pool of urine, right next to the bedside commode. The irony of him peeing all over the floor when we have a medical grade commode sitting inches away is almost amusing. But I am weary of this situation and didn't find it very amusing at 5am. Instead, I asked him why he didn't wear a depends or pad which would have helped keep the urine from getting all over everything, and he told me that he had, but that it fell off. I know that didn't happen, but instead of arguing with him, just let it go. I've realized that it's unproductive and utterly exhausting to try to have any kind of conversation when he's like this so just got him cleaned up and into the shower. A friend has given me the name of a caregiver who is out of town, but experienced in PD and dementia. I will be trying to connect with her to see if she may have any suggestions. |
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It seems as though our husband isn't capable of changing his behavior without medical help. You said you were going to contact the neurologist. This behavior may be something that can be diagnosed and treated. Even if this caregiver has seen the behavior you will still have to have the neuro treat and prescribe for it. Why not call him today? Don't give up hope, there is a solution. HUGS |
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| So sorry to hear of your problems. It might be apathy you are facing with your PWP. This can be a non motor symptom of PD. We are facing that here too. Sending you love and strength. |