Holy Crap!

[michellep]

Well my friends...here I am again looking for advice. My hubby is just driving me nuts. He has good days and bad days of course. BUT, he is so very demanding that I feel as though no matter what I do...it's not good enough for him, fast enough for him, the food is too hot, right down to putting the wrong color straw in his drink! ( no joke) I have been surviving on 3-4 hrs sleep a day since last March. I certainly don't mind if he wakes me during the night for something important, but he'll wake me to simply (for example) measure out his cough syrup for him even though it's on the table next to his recliner (which he sleeps in). I feel like I'm the cook, the maid, the nurse, the gardener, etc etc etc. Plus we have a disabled adult son living with us. Granted our son can do many things for himself, but he too still needs assistance sometimes.

I tried talking to the hubby this morning and just said "honey, on your good days there are some things you can do for yourself and besides you need the exercise because your just going to turn into mush sitting in that chair all the time". Seems it went into one ear and out the other. Before I knew it he was telling me that I put too much milk in his cereal and that the juice I gave him was too cold. UGHHHHHHHHHHHH

I love him dearly and will always take care of him, but how do I get him to understand that I'm tired? How can I get him to realize that there are certainly things he can do himself (only on a good day of course)?

Just typing all of this....I feel a little bit better! ha ha

Comments welcome dear friends!

[shineladysue]

(((Michelle))),

I was caregiver to my husband and as much as I loved him there were days that were hard to get through. He seemed to never consider how hard it must be for me and he seemed very insensitive and demanding. I know with my husband, a part was him just trying to deal with what he was going through and a BIG part of it was due to steroids. Is your husband, by chance , on prednisone or any other steroid? They will turn the kindest of humans into someone you've never met. They can make them very aggressive , insensitive and demanding . My husband knew it was the meds and he would oftentimes apologize for snapping at me or demanding so much.. It's just a thought. Even if this is not the case, this is such an emotional roller coaster for all involved. Many of us do understand and I hope writing about it has helped.

Hugs,

Sue

[Patti B]

Michelle-

I am so sorry you are going through this. Sue took the words right out of my mouth - is your husband on steroids??? When I had my hip radiated they gave me decadron for the inflammation and after a while, I called my doc and asked to be taken off because I couldn't stand myself, so I can only imagine what my son and hubby were thinking of me.

Do you have any other relatives or close family friends that could possible come and babysit him for a few hours once or twice a week. Then maybe you could get some sleep or get out of the house and do something for yourself periodically. I am sure that will re-energize you.

Hope things get better soon. Please keep us posted.

Hugs - Patti B.

[Barb73]

Michele,

The steroids are something that do, indeed, change the personality.

Although, there are days when they cannot be blamed (person is not on them) but instead, there may be a thinking (mental) process involved.

Bill and I have had discussions about that. He understands and tries to make up for it, but my hunch is that thoughts run through the mind, and result in a certain gloom. That, in and of itself, can affect the personality.

It's a difficult road for those with the disease and for those who care for them.

I tend to push Bill into activity if I see him sitting too long in the lounge chair. I remind him that "use it or lose it," is always hovering over cancer patients, especially.

If a person sits too long that inactivity can result in a malaise, which can become the pervasive stance.

You are wise to write it out and vent. It helps to relieve the stress. There are so many in this community who have "been there, done that."

Hope you get some answers. Mostly, it comes down to a lot of talking . It's easier said than done, but can be accomplished - even if by baby steps. It can involve repeated "discussions" to get to a good place. Communicating does not always unfold smoothly, but things can get better by degrees.

We are here for you, Michele.

Barbara

[michellep]

Thank you everyone! Yes, hubby is on prednisone, but he only takes it on occasion so I'm not quite sure if that's the culprit. He seems to be demanding all the time. I'm also wondering if it isn't because of the fact he refuses to discuss his cancer whether it be with me or his doctors. I know much much more about his condition that he does. It's an awful burden to carry all of that on my shoulders alone. I've tried to discuss his disease with him, but he just cuts the conversation off and sends me away. He spends all of his time in the recliner chair either listening to music or watching baseball. His doctor did prescribe Paxil for depression and I had to tell him that new pill was a vitamin because he won't take it if he knew. He's only been taking them for a few days, perhaps it will kick in soon.

I know that my frustration is normal under the circumstances, but listening to him complain because I brought a yellow straw instead of a blue one for his ensure is just......ughhhhhhhh When I gave him scrambled eggs one day he said, I only eat these with a spoon now....next day....I only use a fork for eggs. Soooooo Smart A** that I am, I brought everything....fork, spoon, butter knife, steak knife and a large butcher knife. He just gave me a dirty look! ha ha But, it's a long long walk in our house from the kitchen to the bedroom and honestly I must run at least 50-75 times a day back and forth. Maybe that's why I've lost 35lbs?

As far as having someone stay so I can go somewhere.....nope. We just moved here a couple years ago and was surprised about the difference. People here just don't talk to each other, so we haven't had a chance to make friends. And his children (from a previous marriage) are just....shall I say selfish? They haven't been to visit their dad once since his diagnosis. They did call on father's day, but not a word since. Anyway, that's my story.....just like a soap opera sometimes. Hey.....is that soap "As the world turns" still on?????????? ha ha

[Nick C]

Can I ask a few questions?

Is he just on Prednisone? I'm not familiar with that altering someone's personlity like decadron does.

Which leadds to my next question...is he "different". Not trying to be rude...but was he always a bad patient. I am a crappy patient myself. But does he seem like comepletely not himself? Which leadsme to my next question.

If he is being very unlike himself...is it maybe a good idea to get an Brain MRI? Just trying to think of all the possibilities.

Sorry to hear there isn't another alternative for caregivers to give you some time off.

[michellep]

"Nick C"]Can I ask a few questions?

Is he just on Prednisone? I'm not familiar with that altering someone's personlity like decadron does.

Which leadds to my next question...is he "different". Not trying to be rude...but was he always a bad patient. I am a crappy patient myself. But does he seem like comepletely not himself? Which leadsme to my next question.

If he is being very unlike himself...is it maybe a good idea to get an Brain MRI? Just trying to think of all the possibilities.

Sorry to hear there isn't another alternative for caregivers to give you some time off.

The only steroid he is taking is prednisone. They gave him that to help with his platelets dropping from the Gemzar. As far as him being a bad patient prior, no, he's always been kind and patient in the past when he was ill with something.

I too have been thinking about a brain MRI because he is so confused and forgetful sometimes. We just had a CT scan of the chest and abdomen a few days ago and I have no idea when the results will be in. Everyone tells us something different about the time line.

Yes, I too wish I had some relief once in a while. I would love to just do something maybe an hour a week? But then, I would probably just feel guilty if it happened huh?

Thanks for your post..........I really appreciate any and all inputs I can get from you guys

[jaminkw]

Michelle, I can't imagine what it must be like for you going thru this having recently moved to a new community. I'm glad you come here to vent and gather information.

I'm also glad I read all the posts and particularly Nick's. I probably would have come in with a psychological perspective but Nick made me remember something I learned in training--always check out the physical before assuming a psychological cause for behavior. It sounds like the change in behavior combined with the forgetfulness and confusion would definitely be cause for an MRI.

I wish you could get some time off without feeling guilty. Most towns have Visiting Nurses Associations who will come in for an hour or more for a fee. You'd be surprised, I think, at how much better you would feel with even a couple of hours a week just for you.

Judy in Key West

[RandyW]

My dad has been on prednisone before and it's NASTY stuff. Don't know why mom has not clocked him before !!! When he is off it and he is now, He is great but.....

[michellep]

Randy.....you are too funny! At least hubby only has two days left of the prednisone.....good thing huh?

Judy.....I called the Visiting Nurses....they want $52 hour. Unless I can rob a bank and run really really fast...no such luck. Besides, I doubt he would agree to have a stranger sit with him. I know it's hard and I get really tired and desperate for relief, it's better than worrying about him every second I'm away trying to enjoy myself, which I don't think would happen.

My enjoyment right now is talking to all of my dear friends right here!

Thanks love!

[jaminkw]

OMG Michelle, I had no idea. It was some time ago since I heard someone had them come in and I know the price tag wasn't that high. Come to think about it tho, they are the ones who came to flush my port in KW when I couldn't find a doctor's office to do it. I kept telling them I was mobile but they said this is how they did it. It did cost a pretty penny as I recall. I got them thru hospice and maybe where I am you can get a practical nurse to sit with someone at a lesser fee than an RN.

Sorry dear. You hang in there. I give you lots of credit. It must help to have people respond who've had loved ones on these drugs. Hard as it is to handle, you know it's not really him. Glad to hear he'll be off it soon.

Judy in Key West

[michellep]

Yea, seems nothing is cheap anymore huh? That's okay though. Being in the house 24/7 excluding ER visits and chemo trips, there really isn't anywhere I'd rather be than with my hubby whom I love with every fiber of my being. I'm just telling myself that when he gets crabby, it's either the illness or the meds, it's not the man I love. That gives me comfort ya know

He's really starting to have a lot of pain in his liver area now. It was good for about two days and this morning he asked for pain meds. I had to switch from darvocet because it's loaded with tylenol....even more so than vicodin. Sure hope the ct scan results come back soon. And I'm especially praying that it's not mets. I'll keep you all updated as soon as we hear.

Judy, when will you be getting more news? I'm so sorry to hear the fluid is back. I know my hubby really suffered with that. Especially the chest tube part.

Have a great week end....what's left of it anyway!

[jaminkw]

Michelle, I also hope those results come in soon. I've said a million times, I'm the world's worst waiter. I used to get them same day, now it's next day and that's bad enough. I'm due for my scan Aug 24th. I'm not so worried about fluid. They only found a small amount the last scans and I don't think anything has changed much. My biggest concern is to at least be stable so I can stay on Alimta for awhile. It seems the lesser of a number of evils (chemos).

Judy in Key West

[michellep]

I'll be praying for you my friend. Please take care of yourself and keep us updated because as you know.....we care

[ts]

My Dad has a wound that needs daily care - and while we appeal the decision to stop sending home health care through insurance (Medicare), he is paying for private service - $92 per visit! It probably takes half an hour, at most. He'll be eligible for Medicaid really soon at this rate.

[michellep]

"ts"]My Dad has a wound that needs daily care - and while we appeal the decision to stop sending home health care through insurance (Medicare), he is paying for private service - $92 per visit! It probably takes half an hour, at most. He'll be eligible for Medicaid really soon at this rate.

Ts, if your dad is on medicare and his physician states that it is "medically necessary for him to have a home nurse to care for his wound", then it can't be denied. This is a federal law.....I learned so very much about this myself. Below is the link to the topic "How to get a social worker". Read these many posts and you will certainly learn to fight the insurance game like I did.

When you file the appeal with medicare make sure they know you want it expedited otherwise it could take weeks. Let me know if you have any questions because I have lots of answers from my own experience.

http://www.lungevity.org/l_community/vi ... hp?t=41654

[ts]

Thanks - unfortunately, his doctor wrote in that "any competent adult" could do the care. But based on what we have seen and forsee, a skilled nurse is really needed. The 2nd appeal was denied. The local Congressman's office has offered to look in on this. Fingers crossed.

[jstdzy]

Michelle,

I took care of my Mom when she was sick (congestive heart failure), and some days I just wanted to strangle her! But then on the other hand she is the one that took care of me during my cancer dx and treatment. She would just flat out tell me, "I don't know why you are being so nasty to me right now, but stop it"! I was turned totally inward and scared out of my mind. From what you've said hubby hasn't dealt with any of his emotions concerning his cancer. When I'm afraid alot of times it comes out as anger and when my life is feeling so out of control, I try to control everything and everyone else. My feelings are the next time hubby wants a blue straw instead of a yellow one, say, "Dear I love you, but get of your a** and get it yourself"! At least it would get him out of the recliner! Just a thought he's your hubby and you know him best.

Dana

[fillise]

Michelle--I hear you. I'd ask for the brain MRI too. A change in personality can be a sign there is something going on there.

I hope getting off the Prednisone will help as well. You need a break break and it is NOT selfish to take one.

Is there a respite care organization? They might not be as expensive as the home nurses. Even if you could go to a movie once a week, it would probably do a world of good for the both of you.

Susan

[Patti B]

Michelle-

I know you said that you don't think your husband would let a stranger stay with him. I also know that your adult son is disabled but can he just sit with him for an hour or two???? Getting out would certainly revive you, I'm sure.

I second or third the idea of the MRI of the brain.

Please keep us posted - I think of you A LOT!!!!

Hugs - Patti B.

[Katy66]

Michelle, I'm so with you but in my case I think I have only myself to blame. When Gene was first diagnosed I began doing everything for him and now he expects it. It isn't good for either of us! At least I do have work everyday to escape for a little while (sounds strange huh, work as an escape?) Anyway, Please take the advice you've received here and find a way to get out of the house for a little while, you'll be amazed at how it will change your perspective and probably his.

[Barbb]

Michelle,

You are amazing! You have so much on your plate but I still saw your sense of humor in some posts

My husband would never ask for help and didn't want me to have to help. When I had to shave his face for him, he apologized to me. That was sad.

I hope you can find a way to get out of the house now and then. Even tho I was able to be away some evenings, I couldn't wait to get back home to be sure he was ok. I understand when you say there isn't anywhere you'd rather be than with him, totally understand.

My best for your best,

Barb

[Kristi]

Bless your heart! I agree that you are an amazing woman and my goodness is he lucky to have you!! My Dad is a bear with my Mom too and she caters to him probably more than she should. She's exhausted and in your same shoes, although I don't think he's ever made an issue over his utensils! That's pretty funny even though you probably didn't find it funny at the time!

I think too, that he's got all of his emotions and feelings bottled up and along with the medications, he just isn't himself. My Dad won't talk to anyone either! It's frustrating but just his way. He's always been that way and now he's struggling with how to release those emotions and it turns into grouchiness towards the ones he loves.

Hang in there!! I'm thinking about you!

[michellep]

I'm beginning to wonder if it isn't because of his children (adults from a previous marriage). They live about an hours drive away and have not been to visit him once yet. He loves them dearly, always has, yet he's only gotten a couple of phone calls. Just Father's Day and his Birthday. No mention of visiting.....it's very said to say the least. BUT, he has me and of course my son who just adores him and thinks of him as dad. Yet, that can't always replace your own can it?

So, what I do is focus on the positive and try to do the best I can. I try making him laugh and talk about all the funny crazy things we've done together in our 20+ years together. And both he and my son are huge Dodger fans. My son makes a point of talking to him each day about the game and all the plays involved.

And as far as his kids, they have no idea how much their missing. My husband is a wonderful, loving and caring man. (except when he's cranky ha ha )

[fillise]

Michelle,

You son sounds like a real jewel (a lot like his mother in that respect). I think it probably does your husband a lot of good to talk and think about something other than how bad he is feeling and how frightened he is.

You both are doing all you can and I know your husband is grateful even if he can't show it.

Susan