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Words can't describe


MaryJo

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Dan's surgery was a month ago and he's been in a nursing home for rehab for two weeks. I've seen Dan frustrated, angry, tired, connected to machines with tubes going into and out of his body. I have never, in 36 years, seen him this mean and hurtful. Not just to me, to everyone. He is verbally abusive to everyone at the facility, to Jeff, and to me. He never used to curse and now it comes out of his mouth like the air he breathes. The F word is now used as often as any other word coming out of his mouth.

 

This past Wednesday was the worst. He was angry because Jeff told him that refusing a shower was not an option. Jeff said that they transferred him to a shower bed (never seen one before this) and wheeled him into the shower room. There was a heater, the water was hot enough, the aides were all very gentle with him. He fired Jeff more than once (of course that will NOT happen!) and called everyone every bad name you could ever think of to call another person. I arrived just before the nurse came in with his meds. As usual, he refused them. At home I choose not to argue about pills. I usually bargain with him to take this one and this one and skip the other ones. I tried this on Wednesday and he told me he was going to find the nastiest, dirtiest place to send me and he was going to get his gun and shoot me. Then he told me to leave. I picked up my purse, told him if he takes the two pills I would leave. He stared me down, took the pills, and I left. I haven't gone back and will not go back until Monday. I need a break.

 

He says he's ready to die and I believe him. I don't blame him in the least. He's been through more than I could ever imagine. My original plan for if and when this became the case, was to bring him home for hospice care. There is no way I will bring him home when he is this mean and hurtful. It takes me a long time to give up like I have. Unfortunately, I've given up. There's a care meeting on Wednesday to discuss with Dan, PT, OT, Psych, and the nurses options...what does Dan really want? Does he really understand? What can the facility do to help/assist.

 

Before anyone says he can't help it, it's not him, etc. etc. etc. I know he can't help it, it's not him, blah, blah, blah. I've heard it and said it for four years. Hopefully he'll be a little better by Monday. They're changing meds and trying to calm him down. I'm just so very tired. I'm also very sad.

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OH Mary jo -- I hear you loud and clear... the fatigue is overwhelming.. the mental aspect of it. you just want to crawl into bed yourself for the rest of your life and give up to... My Dan has been off and on like this for pretty much the entire time since the stroke... although your Dan has had much more health issues going on... I have no answers-- i wish i did. then i could solve my Dan issue as well... Point being - what do we allow , what is right, ?? should they /shouldnt they be able to choose how to live/die?? Big - questions - i am not even sure that there is a bigger question in this world .. scary question for them, for us... what is our moral obligation here?? And believe me I am making NO JUDGEMENTS.... I have the same problem off and on with dan... I hope and pray your dan will feel better come monday, i hope you feel better come monday... and i know you are tired and sad.... because for the past years you have been giving 200 % with not much return, and happy to do it , and get so hurt when the hubby gets mean ( believe me i know) -- we all understand like you said the he cant help it ( you and i know this) but it hurts.. you feel not loved or cared about, and you have given literally your blood and sweat to your husband and his care... why can't he see that ?? why would he choose to be crabby and unhappy all the time... ??? oh the questions with no answers -- just the open ended kind.. the ones with no resolution like our lives... Hang in there - honey -- it's all i can offer - that and a cyber hug and pat on the back... from one hard working caregiver who gives it her all to another... You are doing great, you have done great... no one could do any better.. You are a fantastic wife and human being ---- God be with you ..... Nancyl

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Mary Jo, I am so sorry to hear about Dan. Let the doctor's figure out how to change his meds or whatever to help him. Treat yourself to a dinner or lunch out with a friend or a massage. I hope things improve for both of you.

 

Julie

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Mary Jo, I don't know how this will resolve. Is this change in personality permanent? Is it due to medication changes? How do the medical team see the alterations to his personality and do they hope to find a fix? Because without a fix you certainly will not be taking him home with you. No-one can put up for long with the abuse, the threats, the lack of co-operation and the radical change in personality.

 

In our so called advanced society it is hard to admit that science cannot fix parts of the brain that no longer have social skills, that now does not recognise a loved one, that will never give the thanks for the tender loving care and the sacrifice that looking after a long term invalid demands. When do we say "they can't help it" and when do we say"the medical fraternity has no answer to this problem"?

 

My heart breaks for you. I saw this occassionally in Ray, the mean, hurtful person who struck out at the one he loved (me) but usually it was an urinary tract infection, chest infection, something that was putting him into an altered state. And mostly antibiotics were the answer.

 

On the wishing to die issue, I often think their wishes should be granted but our society is not ready to handle the implications of that yet.

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WOW Mary Jo, that's a hard pill to take even in your best ever mood. It is very hard to be there when this sort of thing happens to your husband. I never heard of a shower bed and just maybe he hadn't either and just went bananas. I hope this will pass without another flair up at you.

 

I can only go by what I have done and it has never been any aggression toward my wife or any others in the hospital during my five month stay when I had the stroke. Maybe it's just mental fatigue being there in the home??

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Mary Jo: I work in a subacute nursing facility. I always give my patients at least four days to accept their placement. So Dan has reached my personal acceptance level.

 

First thing, a Psyche evaluation. The facility will have that on staff or on consult. He/she will evaluate the medications Dan is on, test for dementia and suggest medication changes or new meds. OK, so you review that.

 

From what you advise, Dan is used to calling the shots (pills) at home. In a facility, that is not going to happen. We can not pick and choose what we do for Dan. We are regulated by laws If Dan refuses, so be it. Fortunately you have back up with Jeff there, reminding Dan that he has to do certain things to be able to go home. If my patient said no shower, I would have to honor that - regardless of whether or not it was best for him/her.

 

If you know that none of Dan's medications were changed after the surgery and nothing has been added, basically Dan is angry. He is used to controlling the show and is in a place where he has no control. Not a happy guy. Plus a lot of my older patients really have no education as to subacute Rehab. They are thinking, "I am being put here - forever." Now with our strokes, like my Bruce, they are familiar with Rehab and going home. But since they are so disabled, in their minds, this may just be the time I am not going home.

 

Dan is being mean to you because he can. He knows no matter what he does or says, you are safe. You love him. Now I am not saying this is acceptable - but it is what he thinks. And yes, take your time and your space. You must make him understand that he can not bully you - especially with a full nursing home staff to back you up. Just let him know that you have no power (of course you do, but that won't help you) and if he wants to come home, he will do his work. Regardless of how angry he is, you have no control and just will not come back until his attitude is improved.

 

I tell my families "Play the Nursing Home game card." I have no power, you have to do what they say, comply with their rules and you will get to come home. Whatever works. Take advantage of the time you have been given. Walk away, know that Dan is either going to accept his routine or not, but he will not dictate it. I can't, as a Nurse, only give some pills. It is either all or nothing. Same with PT and OT. Personal care, we have some leeway. But Dan must understand that he can not bully you. He either does the work, or he doesn't come home. Bullying you does not help at Rehab and will not get him home any sooner, where he can again rule the roost.

 

Enjoy your weekend. Do all for you. Keep the cell on, of course and just stick to your guns. Praying for both of you. Debbie

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Mary Jo, I am so sorry to hear of this. I can certainly understand how tired and frustrated you must be. You knew going in there could be recovery problems but I imagine you weren't thinking of this kind of issue. You assess the situation, get input from the "experts," make the best decision based on what is needed now. You know you are not super human. You just do the best you can and I agree he's in no shape to come home at this point. Take care of you best you can and I will keep you in my thoughts and prayers. ~~Donna

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Thank you everyone for your comments and support. As usual, your comments are all spot on.

 

Nancy, I agree that Debbie has nailed for both of our Dans.

 

Debbie, Unfortunately, you're right, Dan has called the shots for quite a while at home. Maybe I did him a mis-service by not saying "no" to him enough...it's just easier sometimes to give in.

 

Sue, Dan also has gotten mean in the past due to UTI. This one hadn't occurred to me, I'll ask the NP to take a urine sample!

 

Julie & Stingray, I'm definitely taking time for myself the last four days. In fact, so much time for myself I've done very little in chores around the house! The laundry & ironing will be there when I'm ready to do it, hopefully before I run out of clean clothes! lol

 

Fred, I definitely thing Dan is suffering from mental fatigue. Hopefully the docs can come up with something that will give him some relief.

 

Donna, I think I'm finally admitting to myself that I'm not super human. I've always thought I could fix almost anything that was broken. Dan is one thing I can't fix. It's up to him now.

 

Again, thank all of you for your continuing support. I'll keep you posted.

 

hugs to all.

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Mary Jo: you have done nothing wrong. Make no mistake. Bruce is soft-spoken, never adament or demanding, but he rules the roost. He knows exactly what buttons to push.

 

What is important here and what they do not understand or even care about is safety at home and can you manage his care. You are looking to his safety and management at home and he either doesn't care - just wants to get home - or has no concept of it. Being me, I go for the no concept. We were out today, errands and Bruce kept saying try here or there. Finally after stop four I said to him, do you understand WC in and out for me is exhausting? Truly he had no clue. But in reality, who do you think is doing all this? Get a grip! And Mary Jo, by the next stop, he had totally forgotten - LOL.

 

You have to go with what you think is safe and comfortable. Until then, Dan just has to accept you are doing what is best for both of you. All you have to get Dan to understand is that what you are deciding is what is best for your family and he just has to trust that. You will not give in.

 

Go easy honey. Laundry will get done. House stuff will get done. You know that. In the meantime, check in every day, make sure all is well and get the other projects done that are easier on your own. Prayers, Debbie

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