Confusion update from tovah - please help

[ElectLive]

So good to hear the improving news. One day at a time is very true. It can either feel like, or really be, a long slow process, but each day should continue to bring more and more improvement. Best wishes.

 

[Sarah_Louise]

Thinking of you both,
Love Sarah xxx

 

[Tovah]

Again, I thank you all.

I went in today (Sunday) and he does seem better, yet he doesn't seem like my Type A personality husband. More subdued, also still a little confused and using words that don't quite work.

When I got home, about 2:00 today, my husband called and he said that the doctor said that he would be going home tomorrow.

I'm scared to death. How will I get him treatment physically and mentally? He saw a neurologist (the doctors always seem to come when I'm not there and I'm there alot) who said there's some kind of pill that can make him a little bit sharper mentally.

I really think it's too soon, but I don't want to risk infection, as according to jkm7.

Also, why is noone talking to me about how to work with him at home and what to do? I feel i'm being stranded here.

What should I buy at the Medical Supply place? I know I have to get him a walker. Anything else you feel has helped?

Thank you,
All my best,
Tovah

 

[ToddinMaine]

Tovah, express your concerns to the hospital staff. You've got to advocate for your husband and yourself. Tell his nurses about your fears of infection both in and out of hospital. They'll be happy to explain the precautions they take, and what you can do at home.
His discharge nurse will sit down with the both of you on the day he's scheduled to leave and go over a list of needs and review written instructions with you. But be vocal, and ask questions. There should be a social worker at the hospital that can help you with getting assistance at home. There typically is alot of help available to those who ask.
If ultimately you and your husband don't feel that he's ready to leave, express that to his nurses, his PA's, Docs, everyone who is involved. Be polite but firm.

Best of luck,
Todd

 

[Tovah]

Thank you.

I feel very angry that they went to him after I'd left the hospital and told him that he could leave tomorrow. I feel it was done on purpose to get him all excited and that I would find out after the fact.

He needs more care, especially physical therapy and mental therapy.

He can't just come home and jump into his old schedule.

 

[epstns]

Tovah,

My daughter works in the medical field (not a doctor or nurse) and her advice is that when you feel that you've reached the end of your patience in dealing with the hospital docs and staff, just politely ask "May I please speak with the Patient Advocate." The Patient Advocate is the one whose job it is to help you and your husband deal with difficulties in treatment and plans. The medical staff will jump when the Advocate starts probing into their actions. The Advocate works for your husband and for you.

 

[Lynlw]

I'm sorry everything is so confusing and the doctors came after you left. Also since your husband isn't quite himself yet, he might not be understandling or explaining what they said corectly. I know it is very tough when someone is in the hospital and draining especially if you have other things to a take care of worry about, But I think if it were me, IF possible I would try to get to his room as early as possible tomorrow morning and stay as late as you can. That really is the only way to be able to talk to all of his doctors and not miss them. Usually rounds are very early in the morning but that is the best way..in MY experience in really find out what their thoughts and plans are and when you can bring up things you are concerned about. That's also the best way to make sure you can talk to the various staff like PT, respitory etc to find out what they are doing now and what they think he need help with still. Also talk to his nurses and the social worker. IF they say he is fine to go home but you dont feel comfortable, you could also ask to speak to the patient advocate. Find out about getting help at home or what they recomend. Honestly the more you can be there the better chnces of getting everything coordinted and make sure everyone is on the same page. I'm not saying you have to be there 24/7 but the earlier you can be there in the morning (like 6-630 ish) and if you can stay until most the surgeries are finished up the better.. Of course you can even be there 24/7 and STILl keep mising the people you want to talk to since they seem to come when you go to grab something to eat or the bathroom. but they usually are still on the floor and you can catch them Also weekends are usually tough to talk to anyone or make plans, since most of the staff is off and others like PT are short staffed, hopefully tomorrow will be alot better.

I know you don't expect him to jump into his old schedual right away, but is he able to stand and walk even short distances by himself? Do You have stairs he will need to go up and down? IF so mention that. they should make sure he can go up and down stairs, even if it is slowly if its something he will need to do at home.
Can he sit up From laying? Its tough for almost everyone to Do at first but if he can't make sure you bring that to the doctor attention and also PT so they work on it..

Does he still have any lines or drains in or on O2? If so, chances are he wont be going home tomoorw if that helps. His surgery was about 4-5 days ago am I remeberring right?

Also for what you need to get for him. I would ask the nurses before you buy a walker, most times they specifically dont want you to use one (unless you always do) because it puts to much on the sternum from leaning on a walker with your arms
Now you might find it helpful to get a shower seat, most people dont need them, but if he is weak or unsteady on his feet, it would probably help in the beginning at least
There is a pretty good thread here about setting up for home, not everything is neesecary for everyone else but it can give you an idea of what helped alot of people. http://www.valvereplacement.org/for...How-to-prepare-a-house-for-homecoming-patient

 

[Fundy]

If he needs a walker to get around, I can't see why they would discharge him. I don't think I was able to be discharged unless I was capable of doing a flight of stairs. If he's not capable of walking, and unless he really wants to go home himself; you might want to consider refusing to take him home.

 

[SusQ]

The question is, is he really coming home? I would confirm everything with the hospital before getting too worked up. He's had an awful lot of confusion and it is quite possible that the doctor didn't even see him. Maybe he had a dream while dozing that seemed especially vivid and he's interpreting it as something that really happened. Maybe some of his medications are interacting with each other and causing some lingering, I hate to say delusions, but like that. I've worked with elderly people for 20 years and sometimes drugs you don't think would cause a mental issue, do. I had a lady who swore up and down that someone was breaking into her apartment at night and chipping the enamel off her teeth when there was absolutely nothing wrong with her teeth.

However, if it is true, I second getting the patient advocate involved and continuing to voice your concerns over your ability to care for him when he gets home.

 

[Mom2izzy]

What should I buy at the Medical Supply place? I know I have to get him a walker. Anything else you feel has helped?

My grandmother had an electric reclining chair that would also help push her up into a standing position because she didn't have the strength in her legs to get herself up. Since a lot of people here have mentioned sleeping in recliners when they first get home, something like that could serve a dual purpose. I believe you can actually rent them.

I would make sure to question whether he will be able to use a walker. I haven't had my surgery yet, but was under the impression that you don't want to put much weight/pressure on your arms right away.

I've also seen shower chairs mentioned here as well. My grandma had one of those too, and it was very helpful since she couldn't stand on her own for long. Baths were also not an option because it can be tough to get in and out.

I hope you get things resolved to your satisfaction!
~Lisa

 

[escargome]

Tovah,
I too have been reading your posts with interest. I would agree with Steve about asking to speak with the Patient Advocate or the hospital Social Worker. Lay all your concerns out on the table. Get all the answers you need to feel comfortable. I know that if they wish to discharge him, someone will need to sit down and speak with you about the steps that need to be taken. Is the hospital staff aware that you are his wife and will be his primary care giver? If not, then speak up and make them acknowledge you. From personal experience I had a doctor removed from caring for my husband because his doctor did not even have the common courtest to acknowledge me while I was in the room. So I will keep you and your husband in my thoughts and take courage, you will be able to get the situation under control.

 

[onset]

If he is Medicare age he is entitled to short term skilled nursing care for rehabilitation. Usually that is done in an acute rehab setting in the hospital or skilled area of a nursing home.

 

[Tovah]

He's not doing well. We did get him into rehab, as the hospital was going to release him no matter what and he was alone for a couple of hours while I went and got my car from the hospital,etc. When I got back he was on the floor (he said for two hours, I think for about 45 minutes)having fallen out of bed. He had taken off that buzzer they have to contact the nurses and was just sitting there with a large cut on his forearm.

I don't think this place provides enough therapy, mental and physical, that he needs.

 

[Sarah_Louise]

Tovah that is absolutly ridiculous!!!!!
Not sure what the complaint system is like there in the US, but something really needs done!
Hope your husbands okay,
Thinking of you both so much!! is he home or did they keep him in after the fall?
Love Sarah xxxxx

 

[Diana22]

Thank you so much for your thoughtful comments.

My husband is 20 years older than me, yet I never thought we would be up against something like this. We just never discussed it.

We were both looking forward to him having his "new" heart and he and I would resume traveling and such.

I have been there for both visits when his doctor came. He saw my husband very confused yesterday, but didn't seem too concerned. Today, when I was in the ICU with my husband. he took me in the hall and said that they are hardly giving him any pain meds now, as that would make things become clearer for my husband.

When I walked in, I said I wanted a neurologist to see him and, at first they said no, then said they would send someone up.


When I went in first thing in the morning, he actually seemed lucid. He asked his nurse to leave the room. In a quiet voice, he said, "I'm dying". Just that simply.

I told him that he wasn't, that the surgery was a success. It was just taking a little time for things to come together. He just smiled.

Then, he seemed to go into that other state where I can't reach him.

I go over and over in my mind whether we made a mistake in getting this done.

I want my husband back and i'm scared to death.
I mean, is it possible he knows something I don't?

Tovah, what you wrote here mirrors my own story. My husband (also 20 years older than I) went in for a new valve, and after 24 hours, I noticed he was going downhill. For three days, I begged doctors and nurses to please listen to me. They were due to send him home On Saturday. I noticed his stool was nothing but black tar, yet I couldn't get anyone to listen to me. They all said he was okay, and was going home 'tomorrow'. Long story short, he had a smaller stroke, and went blind and couldn't speak. Later on Friday, he had a massive stroke and finally died Saturday morning. I had an autopsy done. He had bled massively into his stomach, and when his stomach couldn't hold any more blood, his body cavity filled with blood until there was no blood left to go to his brain and he stroked out. He died from coumadin and internal bleeding.

Listen to your instincts, and never give up. Be a pain in the butt and fight for your husband.

 

[Tovah]

Hi everyone:

I got him into a rehab facility and his cognitive abilities do not seem to be doing much better. I have demanded a neurologist for as soon as possible. He's also being extremely difficult and combative.

I stayed over last night, but am taking a break today and possibly tomorrow.

I am overwhelmer.
Thanks to all of you for your help.

 

[Jkm7]

This is so upsetting.
It seems his doctors wanted him out of the hospital and no longer their problem. He is still their patient. Have they abandoned him?

Of course, you need to get some rest. You cannot forget to take care of yourself while in this whirl. You know he is safe and being taken care of and you need to restore yourself in order to continue fighting for and with him.

Have you seen the MD's who treat in this rehab facility? Do they have a care plan?

 

[Greg a]

Hi everyone:

I got him into a rehab facility and his cognitive abilities do not seem to be doing much better. I have demanded a neurologist for as soon as possible. He's also being extremely difficult and combative.

I stayed over last night, but am taking a break today and possibly tomorrow.

I am overwhelmer.
Thanks to all of you for your help.

As others have said THIS IS NOT ACCEPTABLE and you need to remind hospital staff that your health is a concern and he needs you strong to hellp and not at odds with them but working with them and they need to give you the tools to do so

 

[Sarah_Louise]

Thinking of you and your family so much!!
Love Sarah xxxxx