Old 01-06-2013, 07:03 AM #1 (permalink)
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Default Am I just too sensitive?

My wife seems so cruel to me. She always does what I call a drive by. She asks a question as she is walking by and keeps walking and as I answer she just yells from the other room mumble mumble mumble. It feels so mean. If I even ask for anything I get the same response. I asked 1 thing in a week. Can you please help me cut my big toenails? Mumble, mumble, mumble. It feels like a kick in the gut. We have an adjustable queen tempurpedic but she sleeps won it flat because it is not comfortable for her. I have been on the couch for 3 years. If I say anything she says well turn me in for abuse. What is wrong with her or is it me? No intimacy whatsoever for about 4 years and if I dare ask she says I have been a patient too long for her to see me this way. I wish I really wish I had a little more help and a dash of kindness. She spent 5-10 minutes talking to me yesterday because she works every day and her mom is in the hospital because of chemo so she spends lunch, dinner and every evening there since she works there. When her mom is here I have been her caregiver 10-14 hrs a day 7 days a week since October. What is wrong with this picture? I do all the grocery shopping, cooking, cleaning, walk the dog...everything. I am glad I can but I feel like if you weren't here I could find someone to rent a room that would help out a little. Am I messed up or does this seem strange?

Help me understand this. It feels so lonely. She even covers her face with this gut wrenching contorted expression of disgust because I have to spit goo out of my throat every couple of minutes. I use a stainless steel small Eco canteen with a paper towel and lemon in it most of the time but I have to even spit this thick goo out as I eat. I use an emesis basin from the hospital sometimes when it is real bad but clean it out often. I wish I dint have to but it has been for many years because the constrictor muscles atrophied from radiation many years ago. She was the most compassionate kindest person I ever knew but has become a stranger only to me. She invokes that patient thing if I ask why she treats me like this. She spends all day around patients because she works in radiation oncology. That seems ok and she is kinder to strangers than me even though she works in admin. She is kind to her mother who acts like a real patient every day. What have I done to deserve this?

Sorry for the rant but I woke up with my butt bones sore and just think abut her telling her sister and me the other day that she is going together a reclining sofa so her mother and I can sit out here easier. Huh? Wasn't I asking for a recliner the past 2 years? Excuse me while I pull the knife out of my heart.

<sigh>
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Old 01-06-2013, 06:37 PM #2 (permalink)
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Default Re: Am I just too sensitive?

Oh dear,you can pick friends but you can't pick family........firstly get yourself an hospital bed,you can not further along in progression sleep on the sofa.
Do what you want and can do,don't over do things to please others......you are ill and should not be doing everything.
Have you considered a carer a few times a week,to help in home if needed or take you out and do things.

Any help or advice you only need to ask............i miss your mojo.
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Old 01-06-2013, 07:41 PM #3 (permalink)
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Default Re: Am I just too sensitive?

No Eddie you aren't too sensitive. You are not alone in what you are experiencing with your wife. Over the years on the forum, many PALS have experienced similar reactions from spouses. When a wife or husband becomes a caregiver for their spouse, so many changes happen within them. They go through a whole range of emotions that are similar to what the PALS experiences when diagnosed--such as fear, anger, resentment, guilt, despair, loneliness, grief. The caregiver can get overwhelmed by the responsibilities and the changes that happen to their spouse. It is so important for both of you to have support systems to rely on. And to have people to vent these feelings to and get some constructive guidance to work through them.

My best friend is a nurse. Her husband had a stroke about 5 years ago when he was 47 yrs. old. My friend is a wonderful nurse and shows compassion to her patients. At home she turned into an angry resentful person to her husband. He is quite disabled from the stroke. He has problems with his bowels. She is just awful to him when he has an accident--gags and carries on like a shrew, belittling him. She and I have had many talks about this, but not much helps. She knows and hates herself for being that way, but feels "life is unfair" and that her life is ruined. With antidepressants she contains her ill temper better, but it is very hard to watch when we visit.
He has talked to me and said many things similar to what you have written. No intimacy since the stroke, no hugs, no respect basically. But he does not want to leave and neither does she. I do believe they still love one another, but neither one will agree to any counselling or therapy so their new normal is this bitter, barely civil relationship. I encouraged him to make a life for himself i.e. go out to the stroke drop in centre, make coffee dates with friends, try to do walks to have exercise, and take the best care of himself that he can. He went to a writing course and that seems to really help him --as he is writing his life story and that releases a lot of his pent up feelings.

Eddie life is so complicated isn't it? Some people turn into heroes when faced with adversity and others just give into the blackest side of their natures. I didn't mean to ramble--just want you to know you aren't alone and it is not anything you have done. We are all here for you. Hugs and love,
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Old 01-06-2013, 08:38 PM #4 (permalink)
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Default Re: Am I just too sensitive?

Thank you Laurel. It helps to know others go through this. I see the world the same through my eyes and others see me as I dwindle. It must be tough to see especially since this about the third time I have wasted away. I have an appt to check out a tumor in my cheek. I think it may be either a reason for some bad news or just other bad news that can't be explained. Heck of a choice. I will choose C) None of the above. I don't want to hear that Big C again my gut is just repaired from the September back up the last half of the month. Nite-nite.
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Old 01-06-2013, 09:23 PM #5 (permalink)
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Default Re: Am I just too sensitive?

Good luck. Fear and anger can get the best of any of us. One day at a time. As my mom used to say "if you want to make God laugh make plans."
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Old 01-06-2013, 09:29 PM #6 (permalink)
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Default Re: Am I just too sensitive?

Hugs to you Eddie.
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Old 01-07-2013, 12:08 AM #7 (permalink)
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Default Re: Am I just too sensitive?

I don't have the personal experience to comment intelligently on what you're going through, but thankfully I see you've got some wonderful responses from people who have been there. I will say, I've been reading your posts and I think you're an effing hero, man. You approach your situation with courage and determination ... the only word for it is ballsy. I think of my fiance treating me like that (hard to imagine) and I would be so devastated, so I hope you two are able to find your way through this challenge together. For what it's worth, I'm a big fan and here's to your kick-ass attitude. Keep that mojo working, brother.
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Old 01-07-2013, 09:13 AM #8 (permalink)
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Default Re: Am I just too sensitive?

I can only agree with everyine here. I hope things get better for you. You are an amazing person, so strong and brave. Hang in there. Sending big (((((hugs)))).
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Old 01-07-2013, 03:23 PM #9 (permalink)
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Default Re: Am I just too sensitive?

Hang in there Eddie! Sending you a hug. Kim
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Old 01-07-2013, 08:25 PM #10 (permalink)
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Default Re: Am I just too sensitive?

We had a bit of this issue too. My dad had ALS and mom and I were his caregivers. Mom I noticed sould get very impatient with him, and I talked to her about it because I also saw dad's frustration and emotions when people didn't listen to him.

I talked to mom and we agreed that we need toslow things down. Dad wasn't able to yell at us in another room anymore his voice was weak and it took a lot for him to get the words out.

I would suggest if you have some down time with your wife that you try to have the same sort of calm rational discussion. As a caregiver we somtimes don't think before we act. And we get frustrated too and that dosn't help we know but somtimes its unavoidable. Let your wife know how you feel and let her know you love her and that communication is going to be an issue from now on.... that you have to work on it together.
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Old 01-07-2013, 08:31 PM #11 (permalink)
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Default Re: Am I just too sensitive?

So sorry to hear that are dealing with this. It may be the caregiver thing. It may just be communication issues, but you should address the issue. Do you go to an ALS clinic? Maybe the social worker has some good information for you to use.

I have read other posts by you and I second the remark about you! Your an amazing person with a great outlook. You help people with the kind words you say and your perspective. I am sorry that you have to deal with the struggles of an abusive spouse. Mental abuse is very hard to deal with. I hope that somehow you can resolve some of the issues.
Prayers and hugs sent your way.
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Old 01-07-2013, 09:56 PM #12 (permalink)
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Default Re: Am I just too sensitive?

Eddie, you seem like a really great guy. I, too, hope that maybe you can find a time to have a really good, effective heart to heart with your wife. I, too, think you're an "effing hero" (loving Luke, too!). ALS is so hard on its own......I can't imagine making it harder with a cruddy attitude. Peace to you, both.
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Old 01-08-2013, 05:05 PM #13 (permalink)
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Default Re: Am I just too sensitive?

Thank you everyone. I am better, opened up some discussion with a lot of love inserted. Maybe the tides are a turning! One of the tough things with all chronic health problems is that from inside the world always appears the same but from the outside it must be especially difficult and the helpless feeling must get oerwhelming. We got an e book by Hiroshi Mitsumoto about ALS and it was/is a good read that puts a lot in perspective.
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Old 01-08-2013, 05:31 PM #14 (permalink)
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Thinking of you Uptown and hope things improve for you. Hang in there. Kim
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Old 01-09-2013, 12:00 PM #15 (permalink)
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Default Re: Am I just too sensitive?

feel for you me old son..a desperate situation to be in......your missus i feel for also...working full time, looking after her mum and you...what a load to carry.....aint got no answeres for you..wish i had....johnny
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