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Topic So frustrated - I want your input Go to previous topic Go to next topic Go to higher level

By dkleinert On 2013.01.25 19:12
My PD husband is driving me crazy.....I want your input. Is it the PD or is he just being lazy and not caring about what he is doing.....

I feel like I am living with a 2 year old or worse. The only difference seems to be that you would discipline a 2 year old and know that in time the 2 year old would be better at doing the things you teach them to do - with PD - it only seems to get worse, never better.

My PD husband is almost 72 years old. He was dx with PD 8 years ago. He just can't seem to remember anything we talk about him doing to be responsible for himself. He has been tested and does not have Alzheimers.

I ask over and over again that when he takes off his "depends" that he bag it with the reusable grocery store trash bags I keep for him in his bathroom so it does not smell the rest of the house up like urine. He really just continues to throw them on the floor, behind the door, where he steps out of them, wherever he feels like it. He leaves his clothes all over the bathroom and bedroom floor. He leaves his sox on the floor....his favorite place for things is on the floor. He leaves kleenex all over the place. The problem with the kleenex is his dog loves to tear them up into little pieces. She won't touch anything else except his kleenex!!

WHY DOES HE DO THIS!!!! He will leave his clothes all over the bathroom floor with an empty open hamper 2 feet away!!

Is is the PD causing him to "forget" to do these things? I get so frustrated and angry about this. I have so much to do that these things daily just really frustrate me a lot. I HATE the urine smell - stale urine smell. I don't want anyone to come to our house because I never know when he will do it and all of a sudden I smell it when I walk in the door and sure enough, I go to his bathroom, and there are wet paper underwear on the floor, wet , urine soaked clothes on the floor, a urinal with urine in it......I have begged him to empty and wash out the urinal after he uses it.....he just won't do it.

HELP me - someone tell me why this continues to happen. How do you deal with it????

There are so many frustrating things about this AWFUL disease - the urine is one of the worst, although, I used to think it was the worst, and two nights ago when I was up late working, I heard this loud sound in his bathroom, and went in to see what happened (thought maybe he had fallen again), and he had rushed to the bathroom and not made it and had pooped a huge pile on the floor and in his "depends".....he felt badly, but he could not clean it up, so I had to. That was a first - is that what I have to look forward to, more of this also??????

Also, my PD husband won't pick up his dishes from the table or pick up anything where he leaves it. It is awful. Pretzel bags, plates, cups, tablet, phone, sox, dishes, magazines, anything he was using - he just leaves it there. I have begged him to put things away after he uses them. He always says he will, but just does not do it. Every night I spend 20-30 minutes going around picking up everything that has been laid down while I was gone that day.......how do you handle this type of thing???? - or maybe you don't have this problem......please tell me what you think or suggest I could do for this.

I love all of you - you are my hero's - those of you who care for those with PD, and Lorengrin - YOU are my hero also!!

I still work 50+ hours a week to support us. My PD husband goes to the local senior center 3 or 4 times a week to play cards and has a Physical Therapist who comes to him 2-3 times a week. He is still walking, however, only when he does his Delay the Disease exercises is he good - otherwise he freezes a lot and falls. When he will do those exercises, he even stands up straight and walks well for that day anyway.

I miss interacting with all of you on this forum - you don't know how comforting it is to know you are still there!! Love and BIG HUGS from North Carolina. Donna

By lurkingforacure On 2013.01.25 20:35
Ditto for us, too, although we aren't in Depends...I wish I knew the answer to your question as I have asked it myself many times. I think in my case, my husband just feels like crap and it's too much effort to bend over and pick it up to put in the basket or hamper or whatever you have. I think it bothers him, but not so much that he does anything about it. It drives me nuts too, let me tell you. I rarely use our bathroom because of his not flushing the toilet (I have no idea why he doesn't do this very often anymore, no one knows), the urine smell festering in the toilet for a day is just too much. My husband has never done a load of laundry since we've been together and I'm not even sure he would know how!

What do you do? Just cope, I don't know how, you just do. I know that everyone has a breaking point, though, and once you reach it, you need to make some changes. Cqn you get away by yourself for a long weekend? Is there a business trip you could take? It sounds like you are at your wit's end and perhaps should line up some family to either come stay with your husband so that you could get away for a long weekend or he goes to stay with them. Is there any way that you could do that? If you started planning for it, knowing that a break was coming in your future might help you make it there with less stress:)

By dkleinert On 2013.01.26 00:13
thanks soooo much for your input - it means a lot to me. He and I just talked, mostly me begging, earlier tonight about him picking up his clothes and not throwing them on the floor and I just went in to put him to bed, and his clothes he had just taken off were on the floor........yea, I know he feels like crap, however, I also know that when something matters to him, he gets up for it. On the days he goes to play cards or dominoes at the senior center, or a friend is coming to take him to lunch - he does all the right things so he can do that for himself. I cook all his meals, clean up everything, do all the shopping (he has not driven in 6 years), put it all away, take care of EVERYTHING while he plays games on his phone or on his nook tablet or does his "research" on the computer.......but he can't pick up his clothes and put them in the hamper.....I guess I just don't get it. I am going to do as you say. I am going to plan a trip to the Mountains - to my favorite place - all by myself. My son and his family live here and honestly have never volunteered even one time to help me by letting him stay with them for even an hour, so I will plan my trip and let them know in advance that he will be staying with them. I feel good just thinking about it. Thanks for the suggestion. I have not been away from him in 8 years. HUGS dear friend!!

By LOHENGR1N On 2013.01.26 00:57
D, Okay, I'll take a stab at this. We all know the classic signs of Parkinson's, tremor, slow movement, drooling, freezing etc, etc. The trouble you are describing sounds like problems little discussed about Parkinson's. It's effect on the autonomic nervous system and parts of our brains. Reading your post I think what is happening is He's not really forgetting to do things like picking up after himself or not making it to the bathroom in time. As the disease progresses in time We don't get the signals correctly instead of receiving the I have to go to the toilet urge it is delayed and we get "oh no I really have to go" signal too late and mishaps take place. I'd like to see a study done on the not picking up or emptying urine bottles. Just to see if I'm any where near right. I think our bodies and brain using what lesser and lesser amounts of neurotransmitters are left in them kind of shuffle them to parts most important for Us to function.

Along that line of thinking keeping the heart pumping, lungs breathing, trying to keep blood pressure level. Keep Us upright and walking as best it can. These actions take priority over stop bend over and pick up a sock, put the empty chip bag in the trash kind of thing. Does it make it less maddening when things are left lying around no, does it make it easier to have to go around picking up things you've reminded then to pick up? No. I don't know how to make it easier if this is what is happening in our brains other than to try to tweak our med's but they can only be tweaked so much.

Maybe about the only help it does do is that it isn't because We're being lazy or ignoring You. It isn't because We're being selfish or just don't care about your feelings. We aren't making messes for some perverse joke being played upon you. Some behavior can be side-effects of the medication as We all know but many things We wouldn't think of PD causing can be caused by PD. Some here on the forum have asked lately that truths be told about PD and not to sugar coat it. Truth is Parkinson's Disease is devastatingly cruel. It not only wreaks havoc with our bodies but with our minds. We might remember better about picking up after ourselves right after our med's start to work and not remember as well when the wear off. In all honesty I don't know of any demented Parkie plot to purposely get our caregivers committed. Hope this helps at least a little. Take care, best of luck and hang in there.

By dkleinert On 2013.01.26 01:19
LOHENGR1N - WOW! You make so much sense. I had NEVER thought of it that way. I do love him so much, and I had being angry and frustrated with him so much of the time.....sounds like it is because not all of the brain is firing all the time, and sometimes parts of it just don't work. Funny thing, he has always felt, and I can see it, that his meds don't have any affect on him. Like the wearing off thing.....his Neuro always asks if he is "on" or "off", and Joe can't tell him, and neither can I. He does not seem better after taking his drugs, nor worse as the time between doses grows longer. It has always been this way. One time his Neuro told him to stop taking everything for 2 days to see what happened, and what happened was that he could not stand up, or function at all, so we know the meds are doing something - just not what we have read about with other PD folks. So for him, it must just be the not firing of the receptors in the brain, and so he does not even think about what he is doing - that makes total sense to me. I KNOW he is not doing it on purpose.....it just feels that way to me 'cause I have to take care of so much. Sometimes when he answers his phone when I am away or I ask him a question about something - he sounds so "normal", that I forget until I look at him that he has PD.....then other times he says something non-sensical and I am taken off guard. One day recently he was sitting in his chair watching TV and started talking about something totally off the wall....I said "What are you talking about" and he said - oh, I guess I was asleep.....his eyes were open and he was watching TV, but totally not there.....then nothing like that has happened since....so strange how the brain works or doesn't. THANK YOU, dear Friend for your powerful insight. I need your help with this so much. The last thing I want to do is make his life difficult - I want to help him in anyway I can and I do cherish him. Forgive me for being so frustrated....you have helped immensely!! BIG HUGS TO YOU!

By carman96 On 2013.01.26 05:03
I could have written the first post myself. I try not to nag him too much because I don't think he can help it. Why can't he flush the toilet?!! It is so exhausting cleaning up after him. At least I know I'm not the only one with this problem!
I honestly don't know how you people who work can do it all. I don't feel like I can leave him by himself any more. Luckily right now we have a friend staying with us so I can leave for a few hours a couple times a week. His daughter and his sister have both said they would take him for a few days but I know he would be so humiliated to have anyone else have to change his Depends or to help him pull his pants up. Besides they both work so who would stay with him in the day? These are some of the many things that go through my mind at two ln the morning like it is right now after getting up to help him change his wet pants. Going back to sleep is always a problem for me which of course doesn't help my exhaustion during the day. I know things will only get worse which of course makes me worry even more. For now I can only do the best I can for him. I told his neuro it is like having a two year old. She agreed so I guess that is a common complaint! Hang in there everyone!

By jcoff012 On 2013.01.26 11:34
I see a commonality in so many posts on this board...caregivers who felt it necessary to "do everything" early on, but are now burned out, sad, and simply worn out.

That is why some of the best advice I was given from here was to allow my PWP, my husband, to have his alone time and to NOT do everything for him for as long as possible. We are only four years into this disease, although we know now that he has had it for years. He is still highly functioning, but worsens in some ways, almost daily.

You see it in the way he walks, talks, or comprehends situations. He is more short tempered, drools, walks with a stoop, and those tremors...I don't know how anyone could survive constant shaking...Now he has arthritis in his spine and shoulder, meaning he is rarely without pain.

BUT, I still try to not do too many things for him...like the other night, we went out to dinner and I walked forward to help him pull up his jacket...realizing as soon as I stepped forward, that was the WRONG thing to do...He bristled...said nothing, but I realized he was in public and didn't want me to treat him as if he couldn't DO it.

I agree with Al, this horrid disease takes away so much and leaves behind a person who without the disease would NEVER leave a mess, or not flush the toilet...

My SIL said it best to me, "I want Dad to go out of this world with a hammer in his hand." (My husband loves cabinet making and working in his shop). Like me, our adult children accept that he has the disease, but say things like, "We are taking Dad to learn fly fishing...if he can't bait the hook, WE will do it for him, no big deal." ;)

What I also see as a constant is that the majority of the caregivers had/have no real idea what this disease is like and what it takes away. Not until they are faced with the harsh realities. Perhaps the fact that we went through this with his mother for 22 years, we do know what is coming. We have tried to plan ahead, set our finances in order, and joined the local support group.

But, it helps to come on here to ask questions of others, get their advice, and possibly to encourage and support others.

Please take care of yourself. I want the two of us to be as "normal" or "new normal" for as long as possible, so we keep going on doing things as best we can. I wish for you and others all the love you need...and the compassion you have and need to face this disease...Love and hugs, Jane

By GladIhavehorses On 2013.01.26 15:32
Just a thought. My hubbys urine was also very strong smelling and staining the toilet. I mentioned it to our family doctor and he had his urine tested and he indeed had a bladder infection. He was put on antibiotics and his urine is back to normal. He drinks more water now to help flush out his bladder. I know with my elderly mother everytime she had a bladder infection she would act a little wacky. Hope that is helpful info.

By cmonge On 2013.01.26 21:13
Interesting I was just going to start a post on this very topic. I am so burnt out and all I do is cry. My PWP won't admit he's getting worse, the doctors are no help, they won't even take his driver's license away. His psychologist is no help either. My husband can't take any meds because he is also bipolar. Quite honestly, I don't think I can go on much longer if he won't help himself. I am thinking of leaving despite the guilt that goes with it. I am not getting anywhere with his family but maybe if I'm gone someone will step up to the plate and see what needs to be done.

By lurkingforacure On 2013.01.26 22:00
Donna in NC: so glad you are planning a trip. I love the mountains too and especially NC, you are so lucky to live there! Please let us know how your trip goes and how it helps you. I hope you have a fabulous time.

I think most of us here could cope better if we didn't see our loved one with PD completely change when there is something they want to do, as was mentioned by others. With my husband, I get most frustrated when he will announce tthat he is lunching with a friend, after telling our youngest child that he just can't play because of fatigue and pain. The kids are like "dad's a liar, he just doesn't want to play with us" when they see him an hour later, dressed and heading out the door. I think they are too young to understand that his PD changes from hour to hour, and even if they could understand that, they would think, "fine, then he can play with us then instead of going out to see his friend". I, however, am really torn between him maintaining the few friendships he still has and getting pissed that he's ditching us for the friend, especially after all I do to keep the family running.

I think, also, the comment about not doing too much too soon is spot on. I have deliberately, out of both frustration and desire to help my husband stay as independent as possible as long as he can, quit picking up after him as much as I used to. I used to flush the toilet all the time after him (if I noticed he had used it), but not anymore, because I am not going in there unless it's toilet-cleaning-day. I don't carry all of his glasses every morning into the kitchen, and if he runs out of glasses, he just has to reuse one. I cannot wash twenty glasses every single day, and we have other people in the family who need to use a glass too!

I try to watch for cues, so if he's having a really hard afternoon, I do extra help, but I don't want to do too much. It's a fine line, I want him to know I love him and am there for him, when he really needs it. Recently I told him bluntly, "you are not so bad off that you cannot pick your dirty clothes off the floor and put them in the hamper" It was a really bad day and I was pissed. He was surprised, I think, to hear me say that I thought he was perfectly capable of doing this, and he started making an effort to do it. He forgets most of the time still, but I can see that he is trying. I think it was good that I basically told him that he was not as progressed as maybe he thought he was, and that I was not going to let him use PD as an excuse unless he really was at that point. I think he was almost glad to hear me say this, because what it meant to him was "you have PD, but your function is not as lost as you think it is". I don't know if that makes sense, but it was actually a good thing in an unintended, weird sort of way.

I dont' know if this will help anyone else but thought I'd mention it.

By dkleinert On 2013.01.26 23:56
THANK YOU - ALL OF YOU! I need you so much. After reading all of your posts - some of them more than once - you help to diffuse my frustration. My dear PD husband is doing the best he can. I will be more tolerant and kind now after reading all of your posts. I will be thankful that I CAN do the things for him that he forgets to do or cannot do.....I WILL see the good in the things that I have to do for him because I don't want to be without him, even as things are. Now that I know it is PD causing all of his behaviors and that you are all coping with the same things....somehow just knowing I am not alone and that you too are doing your best to cope each minute of each day with what you have to handle and face, gives me such a boost - we are a sisterhood that we would have never chosen, however now I am GRATEFUL to be apart of you! I will think of you when I am in the NC Mountains in the next few weeks. THANK YOU again for your love and devotion to your PD husbands and to this Forum. God BLESS you! And you too, Al!

By jcoff012 On 2013.01.27 16:05
Di, I posted on your feelings about MJFox and so I feel I know how PD has gotten to your soul. Sadly, we are all here for the same reason...for support, understanding, or to simply vent! Some days are better than others and some just are horrid. But, you are right...we all know what is coming and it helps to ask questions and to listen to what others before us have done or are doing.

Don't ever think you cannot vent or express a feeling because sometimes out of frustration comes a response that clicks and helps!

DO have fun on your trip. DO relax. DO rejuvenate...but know that there are others who understand the lows of this disease...some of us are new to this first hand, but some of us have been through this once before with another loved one, and are going through it again--isn't THAT the pits?!...and there is always change. Love to you and yours, Jane

By dkleinert On 2013.01.30 00:30
Great to meet you,Jane. You are a dear soul also! You are going thru round two!!! I know I could not do this twice. You are remarkable!!!

I love this forum. I am really a changed person after the recent posts of this past week. Something just clicked inside of me and a much kinder, more compassionate, highly tolerant, not complaining wife emerged - been waiting for her to come back for several years now. I LOVE this forum.....you all help me sooooo much! I only hope I can do more for you than rant!! Big HUGS!


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