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  • alicehoo10

    Not sure how to start so I'll just spit it out.  Some of you have read my story already.   A recap he has had ppms for about 5 years now maybe a little more, he has 25% of his heart working, 30% of his kidneys, has trouble swollowing, dementia is starting and now he has Obsessive Compulsion Disorder.   He watches Netflix and applies for jobs all day he's 74 years old 

    with the OCD he has to take 5-6 glasses into the study with him of liquid, pop tarts every morning for breakfast, hot pickets for lunch and ice tea to drink. He gets upset if he doesn't have them.  I have tried to stop the number of glasses but to no use. He still does it.   He was using paper towels to wipe his eyes, then he tears them up in small pieces. No idea why he does this.  My dogs were getting them and eating them. So I switched him to Kleenex thinking that would be better.  No he tears them up too sticking  them in his nose then puts them on paper plates so he can reuse them.  I took those away. No we are going through a roll of toilet paper every other day.   Just about anything I give him becomes a compulsion for him. 

    my sister moved in with us because she doesn't make much social security and she wanted to be of help to me,she likes to cook   On top of that we both are living with my older brother who doesn't like dogs that bark  did I mention we have 5 dogs? 4 standard poodles and one rescue mut   My sister gets upset when my brother yells to shut the dogs up,  she now stays in her room to "keep hers quiet"
    I said we live here he's got to get use to her dogs and they him but she stays in her room  

    So lots of dynamics going on here  to say things aren't easy here at the house is an understatement. Ever since she was sick she's been grouch as heck.   I try to stay positive, otherwise I'd go crazy. My focus is my husband always has been always will be. 

    She got mad at me last Saturday for asking if she had the energy to run an errand. She said no but she'd go with me if I drove. I said that was ok I'd go figuring she needed to rest before my family came over for a birthday party. She got mad started crying and went into her room crying saying she can't do everything 
    today, tuesday was the first day she came out of her room   After not talking to me for two hours  she said we have to talk.  I asked about what for I truly didn't know.   She started by saying things have to change. I cater to my husband too much, I sit and play games on my computer and I don't do my thing.   She does everything.   So that was what the argument was about 

    John's neurologist has upped one of his medications to see if that will help his OCD but it will take a while yet to see if it will help.  

    am I wrong to let John do what he needs to do to be ok   Her complaint was it causes more dishes for her  we do have a dishwasher.  She likes to do dishes right after dinner I don't. So she usually does them but if she doesn't I have started doing them after she goes to bed. I'm a night person since John doesn't sleep well.  I pay for a house keeper every other week, do our laundry and help with the rest of the house 

    anyway she says I need to stop catering to John , muy husband  Make him eat other stuff don't buy the junk he eats   Drs have said at his age and with all his problems they'd want to eat pop tarts and hot pockets too so they are no help 
    medical professionals say that I shouldn't upset him anymore than I have to  so I let him do what he needs to do. 

    Am I wrong?  Am I enabling him and hindering him more than helping?  

    my sister doesn't understand MS and thinks he can change   I wish he could but he can't   

    I play games on my phone and read books on it too.  That's how I cope with life the way it is right now  she doesn't understand.  I've never been one to go out for the heck of it.   She thinks I should get out more without him.  I can't.  We always did things together.  

    someone please tell me I'm doing things right or wrong. I'll listen to you all as you know way more about all this than me. 

    Im just tired of being wrong all the time.  I'm trying my best but it doesn't appear good enough 

    Feeling lost in Texas

  • alicehoo10
    Guess I should mention she is older than me. I'm the baby of the family at 67 next month I'll be 68    She's 72. Guess it's true no matter how much you love your brothers and sisters you shouldn't live with them    
  • maria1
    Hello Alice, Maybe she is doing too much? And needs to pay attention to her needs. Maybe she needs a hug too. Or maybe she is getting ill?

    When she says something ask her, "Why do you say that?" so you can hear her views on the matter.

    At one point my mother was living in two rooms at an assisted living place and she wanted four wall clocks!!! My sister was freaking out about it, why? who knows. So let her buy them who cares, what difference does it make? But when she was fighting with her caregiver(my mother that is) that she wanted spagetti o's for dinner though they never bought any, then it was a problem!

    If your husband is happy, or, doing whatever makes your husband happy is all that matters, and making you happy, and your brother and your sister.

    Order in Chinese and pizza two days a week so your sister has two days she doesnt have to cook, paper plates once in a while too. It takes a lot of energy,, all my energy to make one meal and not burn it and to have everything ready at the same time too, is a minor miracle!!!

    anywhere... has a good remedy, music!!! play some once in a while. Got any old records? Some Johnny Mathis? Herb Alpert? Happy music. When I first stated working at the bank they had muzak and every time 'whistle while you work' was played, everyone who could whistle would whistle, like a hundred people whistling, otherwise with all the other tunes there was quiet.

    Have yoy tried cloth handkerchiefs for your husband? As long as he eats it is okay with me. We switched to plastic glasses that are dishwasher safe so we dont drop things. Also we got covers pieces of cloth that go over the glasses. Glasses of water that sit for a while collect dust and make the water taste awful, or anything else liquid.

    Then there is the issue of privacy. I am here 24/7 and sometime two cats drive me nuts and they go outside sometimes, so does my partner, but basically I am never alone, i have no place to run to and hide, ou fa! Four adults in the same house and animals too. Sometimes our two four foot boys wake me up at night because they want to go out and play, I even think of shooting them!!!!!!!! 

    Alone time is important for all of you, but do not ever let her control what makes you and your husband happy. I love it when i see my partner is happy, he has always been my caregiver but now the nine years older than me is hitting him hard, like all at once. We do fight over the heat, we take turns saying it is too hot or too cold, or it's too loud or not loud enough, or too dark or too bright, but he is getting use to charcoal suppers so I cant complain, giggle.

    Staying in the moment will help your sanity as the madness folds in around you, make you happy, make him happy and then the rest of your family, if you can be happy so can they, it is catching. We all need attention and some of us are aware enough that we have to pay attention to our selves while others ask for others to pay attention to them and they ignore themselves until it is too late. just giggle.
  • alicehoo10

    Maria thank you for replying. You seem to center me and I know I can count on you to be honest in your responses.  

    My sister, mary hasn't been cooking that much the last month or so  I have been getting takeout food so she doesn't have to cook.  Then every Tuesday for sure since we take two dogs to the groomers and don't pick them up until 6 pm so I always pick up dinner then too  on weekends we very seldom cook since my kids usually show up 

    we just started using real plates again she thinks it's a waste of money to use paper plates and cups but it did work well for me and John before she moved in    I also bought John wine cups without stems, they have lids and keep beverages cold and if he drops one they don't break or spill as much as a regular glass or paper cup would  
    I also bought two Britta gallon jugs to sit in the refrigerator so when John wanted something to drink he could get it himself   It was a good idea for  the the first week or two  then he stared spilling the liquids in the refrigerator and down into the freezer   Now we are back to pouring his drinks  I'm thinking of trying smaller bottles that don't spill  I saw a couple on Amazon I want him to try 

     I keep trying things to keep him independent as possible as long as possible.   mary doesn't understand what's going on no matter how often I explain about Johns health   He's not going to get better, I want him as happy and able to do as much as he can as long as he can   If it means I clean up spills and messes then that's what I'll do  I certainly wouldn't do it if I thought he was faking all this but he's not   Dang it I wish he were faking it!  

    I need support, not someone who finds fault with what I do  I'm doing the best I can to handle this disease  and not let it break me  john needs me more than ever  

    So I'm not great at house work  I never have been , I can keep it neat and now that I'm home most of the time I do better and get more things organized    I hate cooking, I cooked when the kids were living at home most nights    John never cared,  if I was happy he was happy and visa Versa   

    it sounds like you think I'm doing ok letting him have however many classes of drink he feels he needs and the foods he needs

    is there a line that can be crossed when taking care of a loved one when you are trying to balance what he can do with safety/ independence?   Can I hinder him by allowing him these things ? 

    I sometimes feel my sister is trying to force us to conform to her expectations instead of realizing we  (John and I) have been a married couple by ourselves for almost 49 years?  This living in my brothers house is not normal for us either,  dont get me wrong she is the best sister a girl could want very loving and giving of herself so I'm wondering if she's not feeling well   

    thank you for replying  Maria, I needed to hear I wasn't completely wrong 
    MS is just the pits !  I'm so impressed with how you all handle this disease   I don't know you very well, but I'd be lost not seeing your posts here  
    thanks again 


  • maria1
    Alice, I would rather test my limits and break my neck than to not know what I am able to do. Getting on a horse at 61 was my greatest joy after turning 50, even when I fell off the beast, ha ha. Danger is a fine line, I get near it every day, I stab or cut myself when I sew! so what, it sure beats sitting doing nothing,, though annoying, I should by bandaids in bulk. 

    Self respect is more important to me than being scar less/, the old, mother please I;d rather do it myself. rules. It is just basic human stuff. My partner has not right to give me permission to do something, I am old enough, I have lasted this long, it sure seems like I know how to take care of myself. And yes, I am less smart, or aware of what the heck I am doing, ADD at 72!!! I dont drive anymore because I am too slow to respond and no longer have depth perception, so everyone on the road owes me big time for not driving. So I begrudgeingly accept that burden, that doesnt stop me from using a tractor as long as nothing is in my way.

    My partner was a boss and he still thinks he is a boss, ha ha ha ha, but I am incorrigible so there.What a pair. I keep calling him old man so I keep reminding myself we both have finite time. Now, he is pulling rank, that I cant get sick because I gotta take care of him because he is an old man, and will milk it for as long as he can. 

    Are you happy? For me, that is all that matters, no body gets out of it alive so might as well have a good time whenever you can, the world is made for fun and frolic, as long as you have the time and the money, so every minute you can be happy, go for it.   fifty percent of all marriages end in divorce, if you must say something, try, kiss off!

    Trust your feelings, and let that be your guide, and thank her for her input. You lived long enough to consider yourself a success, and if no one agrees tell them also, kiss off.
  • alicehoo10

    Thank you Maria. 

    Im happy when my grandkids are around or my two adult kids are here. Otherwise I'm content most days.    Knowing my husband and how he was, I think he'd prefer to try things himself. That's why I keep buying things I think might help him.   He's worth the struggle   I know he's frustrated, I can't help there. He doesn't want to do anything just sit. So I make him do his exercises and then let him be.   

    I do think I will check with his neurologist tomorrow. I found 9 cups in his study tonight. 4 with water and the rest with ice tea.   I think that may be too many 
    can't hurt to check 

    I do feel better after talking to you. My sister still isn't talking to me but I'm not going to let her bother me. When she's ready she'll come out of her room and join the human race again.  

    you know thinking about your getting on a horse that's impressive. I want John to push his limits and me too. We aren't dead yet

      I get on ladders because I still can and don't want to get to the point I'm afraid to do something  because then you can't do it and never will again.  My sister and brother get mad at me for climbing the ladder but if I don't who will change the 6 air filters in the house. All of them on the ceiling!  Who needs 6 ? One in every room?  If I don't I'd have to pay someone to do it.   Since I hurt my knee my daughter came and changed them for me.  She does most things herself too but doesn't think I should be climbing ladders.   I'm healthy well as far as I know I am.  I know how I feel being told you shouldn't/can't do something anymore. How does my husband feel knowing he can't ?   It's got to be hard. So I will continue to be his advocate and let him try   


  • maria1
    You are welcome Alice, That your husband gets up to get nine glasses of water or tea is very good, maybe it is his mind giving him an excuse to exercise. My partner studders now, like a record in a groove. And repeats things, like commenting about an actor or politican,' I never liked him', but I listen as though I have never heard that comment before. The golden years, is like Greenland, a crock of baloney!
  • maria1
    If I havent said it before, many drugs have side effects and interactions with other drugs and doctors are not versed in side effects and interactions, so you might want to discuss his prescriptions with the druggist to make sure it is not something that can be easily fixed.
  • MS_Navigators

    This is Steve with the National MS Society.  

    I'm really sorry you are going through so much!  I wanted to encourage you to give us a call and discuss the situation with one of our MS Navigators.  You can reach us 9am-7pm ET Mon-Fri at 1-800-344-4756.  

    Take care,