# Living in a major hospital



## robin416 (Sep 8, 2013)

That's what my life is these days, 24/7 watching over the sick hubs. Making certain they do everything right.

In between those times that I'm watching like a hawk, I slip off for some personal time. I've discovered an area just outside of the hospital where many family members and some patients go to to have a laugh, to share stories and basically to support each other. 

But that isn't the wildest part. Panhandlers are a problem here. Security tries to keep them out but it's a huge job due to the size of UAB and the numbers of these panhandlers.

Well, several us recognized this one young woman as not being a family member but we did find out she was a patient just recently. was discharged but never left. She was going around giving different sob stories to different people trying to get money out of them.

She was reported to security yesterday morning. They were given info on where she was most likely to be found most of the time and bingo! They spotted her and the chase was on down hospital hallways. They didn't catch her but so far she's not been seen again.

What is noticeable is security going around checking ID's to make certain trouble is not hanging out in the family waiting areas. It's probably not a 100% goal of getting rid of all of them but they have been trying.

We've had some good laughs together which has lifted some of the stress from where we are and why we're here.


----------



## nannypattyrn (Aug 23, 2015)

I'm so glad you've found some much needed personal time and support. How is your hubby doing?
I don't like hospitals much. I guess it's a wonder that I ever became a nurse! However, I was a lot younger in my hospital days. I wish I could figure out a way to retire fully.


----------



## robin416 (Sep 8, 2013)

They did a lymph node biopsy today. The lymph nodes above his lungs are quite large. The neuro is wondering if maybe he answer is hiding there. We won't know until some time tomorrow what they find.

Tonight I'm hoping to be asleep early early. I had planned on that last night too but at 1 AM I had my street clothes on and was down in our special place. Stayed there until 2 sharing some laughs, when I came back sleep came easily but for only four hours.


----------



## nannypattyrn (Aug 23, 2015)

Sweet, restful dreams, Robin !


----------



## seminole wind (Aug 22, 2015)

I have to have a lot of empathy for those families who have someone in a hospital. It is certainly not easy.


----------



## havasu (Jun 21, 2012)

I wish you were closer so I could help you in some way or another girl!


----------



## dawg53 (Aug 25, 2015)

Robin. When I first moved to Jacksonville 4 years ago, I was shocked at the amount of people panhandling. We didnt have that in semi rural southeast Georgia. I gladly gave a couple of dollars here and there to these poor folks despite my new fiance at the time telling me not to give them any money. It was a struggle for me not to give a dollar or two to these people. Then one day while stopped at a stoplight, I saw a young woman on the corner holding a sign saying "need food money for kids," or something to that effect. She held the sign in one hand while smoking a cigarette with the other. Then she put the sign down to answer her cell phone. I then realized that anyone who can afford to have cigarettes and cell phone are already taking food away from their kids.
I found out that most of those people are drug addicts seeking money for their habit and also learned that there are plenty of resources available in the city for the truly needy poor people and it's all free, including free resources for addicts.
Country comes to town. Lesson learned.

I wish you the best and hope the doctors find out what's going on with your husband.


----------



## chickenqueen (Jan 9, 2016)

Robin,I continue to keep you and yours in my thoughts and prayers.Staying at a hospital is like living in another world.It is bright and sterile and can seem unfriendly.I'm glad to know you found a place there to unwind.Remember to eat and drink yourself,you don't need to get sick,too.


----------



## zamora (May 26, 2015)

Keeping you and your hubby in my thoughts and prayers. Hopefully they will find answers soon.


----------



## robin416 (Sep 8, 2013)

I've never met any of you, yet here I am talking about this to perfect strangers. I hesitate to even talk to those I know well about what we're facing. Is it because of the faceless internet, or is it the common bond we share where our animals are concerned? Is it because we understand just from having the responsibility to keep the animals under our care healthy? I don't know the full answer and I'm not sure it matters, you folks here on the forum have been a rock and have supplied me with an outlet I didn't know I needed. 

I do thank you all for the well wishes, for the understanding and for being there when I find the need and time to talk.


----------



## MikeA_15 (Feb 21, 2016)

I will say a prayer for your husband, and like lots of folks, I've been in similar situations where my mind is occupied with concern for a long time and hospitals are a hard transition from the comforts of home. So many different people share much in common when it comes to the trials of life.

Just today I was having lunch at work, sitting in my truck looking over a landscape of grass, maple trees, and picnic tables. I saw a very old couple help each other walk from their car to a picnic table. The man carefully sat down first and his wife was having difficulty raising her leg enough to clear the bench. He helped her with his hand as a familiar action obviously done many times. I became a bit overwhelmed with emotion. They were enjoying some of their last days, something I've take for granted, but less so as I get older myself, and that is important all the time. Enjoying and appreciating the life we have and with those we love. Excuse the length of thought.


----------



## chickenqueen (Jan 9, 2016)

Hey Robin!How's everything?Finding any answers for your Hubby?Are you taking care of yourself,eating and drinking plenty of fluids(wine don't count!)?I was thinking about you and wanted to give you a holler.


----------



## robin416 (Sep 8, 2013)

I was going to keep this private, I have no idea why because in hindsight it really makes not difference.

Visually the surgeon said squamous cell carcinoma. When the surgeon is willing to voice that opinion you really don't need the final lab results. But the partial Mayo results also state a cancer some where. 

They are thinking his current neuro issues are being caused by antibodies looking for the cancer and attacking his nerves. They've start plasmapheresis today to try to remove those antibodies.


----------



## nannypattyrn (Aug 23, 2015)

I'm sorry! But at least they know what they're treating. I deal with squamous cell cancer almost every day that I am working but it's at the skin level which requires outpt surgery.


----------



## seminole wind (Aug 22, 2015)

Sounds like the more they look the more they find. Can you imagine not being a medical person and having to go thru all this with a family member? Good/bad thing you know what's going on. Sorry you and hubby are experiencing all this.


----------



## robin416 (Sep 8, 2013)

On the positive side, it's so small nothing has picked it up yet. Mayo may be able to identify where in the body it's residing or maybe not. 

His nurse came in and interrupted my thought. That's OK though, every bit of attention he receives is a good thing.

He might be released after his last plasma treatment. I gave him something to think about when it comes to his chemo treatments. Like coming here to have it done.


----------



## seminole wind (Aug 22, 2015)

Wow, are you ready for his release? A lot of work ahead, but maybe better than driving and sitting all day every day


----------



## robin416 (Sep 8, 2013)

I know what I want and I know what he wants. That's the battle I'm having with myself. He's in the right place for what he's facing but the longer he's away the more it's going to affect him emotionally. I have very serious concerns about him becoming depressed.

I'm home at the moment to take care of stuff the others taking care of our animals can't which removes me enough that I can think about all of this. Food and water intake are too low which is bothering me a lot and them. My SIL called just as she got near the hospital and asked about what he ate. I called, they said very little. So, she stopped to pick him up a turkey sandwich and a milk shake. 

Oh, his diet is also complicated by a bad gall bladder. They took him off dairy but I know he can tolerate dairy so his sis and I sneak it to him. Like the milk shake she took him last night. 

I called them back after some thought and asked, (begged?) them to do something about stepping his trach down as a signal they are getting ready to cap it off. I explained I know why it didn't happen after the OK was given but that so much negative happened to him in the past week they had to give him something. Even something as small as a downsize of the trach so he can look forward at communicating again. For a moment it sounded like she thought of me as another interfering wife but when I mentioned giving him something after so many bad things and depression she totally got it. You could hear the change and she actually sounded, not excited, but more than willing to do that for him.

Sem, you're right. It's a curse to know stuff but I try not to interfere with anything they're doing until I spot something they shouldn't or don't. I don't even think I can convey it correctly. It's like me spotting the sub-q emphysema that they had missed. I found out none of them had ever seen it or had any experience with it. I talked to an RT and he said he's seen a few but nothing like the hubs. That's what happens when you step back and let them do what they need to do. If the urologist hadn't asked me what I thought about whether his abdomen was extended it probably wouldn't have been until the next morning that I spotted it. Yes, like everything else, this was going on in the middle of the night.

I need to get myself ready to head in to the city to do my running. I need to find time and energy to mow the south 40 because you really could graze cattle on it at this stage. I won't say it will be relaxing because my mind will be churning the entire time.


----------



## dawg53 (Aug 25, 2015)

I wished we lived closer Robin, I'd mow that south 40 for you. It's been awhile since I operated a big tractor, but it would come back quickly.


----------



## zamora (May 26, 2015)

All I can do from afar is think happy and healing thoughts and send up prayers for you and your hubby. Just know that we are here and thinking of you.


----------



## robin416 (Sep 8, 2013)

Thank you, dawg for the offer. It's not really the south 40, that was the place we had before this one. And it's a zero turn these days instead of a tractor. I still miss my tractor though. I wouldn't mind having one just sitting out there waiting for me to fire it up. 

I do Zamora, I couldn't think of a better group of people to be discussing these issues with. It's been a good stress reliever for me. He would probably be appalled that I talked about it all but he'll never know. And maybe all these good thoughts will give him fighting even harder.


----------



## seminole wind (Aug 22, 2015)

Well we won't tell him you did. I think it worked out well because you had no obligation to chat, but did and gave you an outlet for stress and boredom for lack of a better word. Lovely that hospitals , Starbuck's, and McDonald's all have Wi-Fi. I think you found yourself needing that outlet. 

Karen


----------



## WeeLittleChicken (Aug 31, 2012)

So sorry you're continuing to go through this. Hoping they have found the key to getting him back on his feet. Hospitals can be such daunting places but having been to a lot of them I must say you can meet the most empathetic people going through the same trials and tribulations. Thank God for that little piece of sanity. I can't believe there's panhandlers though - that's just beyond low. SIIIGH. Still sending positive thoughts for you and your husband.


----------



## seminole wind (Aug 22, 2015)

That's just peachy with pandlers. People, patients, mostly at their lowest and most likely scared.


----------



## robin416 (Sep 8, 2013)

Did I tell you about the one I ran off? Still makes me angry. It was 4 AM and I was down in our special spot with three other women, this one walked up and asked for a cigarette. We all say no. Then he decides to push. Hey, four women alone, bet they give in. Except this one, me, was already upset, beyond tired and I laid in to him. I told him to just go, we had enough to deal with without him disturbing us. He stood there and stared at me like he was not quite sure what to do while I stared right back. He turned and left. It might not have been the smartest thing I've done in a while but I'll be GDed I'm going to let someone try to walk on me or the others when we were all in the same stressed situation.

There were no guards around. I found out later that someone wasn't where they were supposed to be. That there should always be guards right in the area at night. Bet that changed after an ER nurse found out about it.

WLC, we'll be going through this for the foreseeable future. Just to catch you up, hubs is dealing with his immune system attacking him because it knows there is a cancer there some where.


----------



## zamora (May 26, 2015)

Well, look on the bright side, you were able to let of a little steam. Bet that dude will think twice about who he bothers after that. On the other hand, I'm glad he wasn't a violent panhandler and hopefully security will be a bit tighter from now on.


----------



## seminole wind (Aug 22, 2015)

It should get tighter. Hospitals don't care for negative publicity.


----------



## robin416 (Sep 8, 2013)

We've been moved to the Oncology wing. Not bad, it's quieter. Same types of people taking care of him and in an odd way, me. I have to say this, this hospital seems to be full of people who care and know just what needs to be said to take some of the stress off patients and their loved ones.

Evidently there was more drama in the gathering space last night. Luckily I missed it when I went down at 4. Did talk to a guy who had been bitten by a brown recluse yesterday. Even though the swelling was down in his arm it was still quite large compared to the other. It amazed me how quickly a bite from those spiders cause problems.


----------



## chickenqueen (Jan 9, 2016)

Haven't seen you here for a few days,thought maybe everybody got to go home.Glad to hear you have good people taking care of your hubby and you.Are you taking good care of yourself?My thoughts and prayers are with you.


----------



## robin416 (Sep 8, 2013)

They always ask if I need anything, I always say no but thanks for asking. I don't know about the taking care of myself, it got just a bit more complicated because my permanent bridge decided at this time to become loose. I'm trying to keep it from coming out totally by eating soft food. Thank goodness I run around with a case of Boost high protein in my truck. 

The plan is Friday to head home. We've had back to back medical people for the past several days. And then we grab some sleep when we can. I'm probably going to be taking him straight to a rehab place when we leave. I'd take us home for a few hours but he's incapable of making it in to the house without a lot of assistance. So, we'll get rehab started and get him home as quickly as possible.


----------



## seminole wind (Aug 22, 2015)

From an interview I had with home visit Hospice, they really don't much aside from taking vital signs. The family gives the meds and takes care of keeping the patient clean. What you might need is an aide that comes 5 days a week or 3 days aweek for 4 hours to help him with ADL's. I've met or visited quite a few spouses who do it and they have bags under their eyes and can't sleep at night.


----------



## zamora (May 26, 2015)

Continuing to pray for you and your hubby.


----------



## robin416 (Sep 8, 2013)

I've experienced Hospice with both my Mom and his. The aides did the baths, sat and drank coffee with us and let us just talk. The visiting nurse is the one that did the more intense workups, while the family or aides did the meds most of the time. 

They did say they can discharge us even with the chest tube in place. This morning we were told discharged home, no rehab. We both wondered what they were talking about because he can not stand on his own. If he falls there is no way I can get him up. So the cancer doc is doing some investigating on why the PT people thought he could go home.

Thanks, Zamora. I know there are quite a few doing the same.


----------



## nannypattyrn (Aug 23, 2015)

Wow, Robin, that's crazy. He definitely needs some rehab for strengthening. You may need to get home health involved if your hubby doesn't go to rehab. They will provide a licensed nurse, nurse aide, physical therapy and occupational therapy in home. It's paid for by medicare and most insurances. Hes definitely a candidate.


----------



## robin416 (Sep 8, 2013)

Yes, he is and we had had one before we made the trip to this hospital. But we're entering in to a three day weekend. Had this been the middle of the week I would have felt more confident in going home instead of rehab.


----------



## dawg53 (Aug 25, 2015)

nannypattyrn said:


> Wow, Robin, that's crazy. He definitely needs some rehab for strengthening. You may need to get home health involved if your hubby doesn't go to rehab. They will provide a licensed nurse, nurse aide, physical therapy and occupational therapy in home. It's paid for by medicare and most insurances. Hes definitely a candidate.


x2. I had this with my previous wife. The RN was allowed to visit twice a week for 2 weeks. Then an aide came by the house once a week or when I called needing assistance for a problem. Physical therapy and occupational therapy nurses both came once a week. We had another aide that bathed her weekly or on call basis. It was fun scheduling all these people in between all the doctors appointments UGH! Medicare and the other insurance paid for it all, not a penny out of my pocket, including the Jevity for tube feeding her.
Some of her meds had copays, some free.


----------



## nannypattyrn (Aug 23, 2015)

Home care should have on call staffing. The ones I worked always had a licensed nurse on call and to cover all weekends even holidays.They used to not be able to come on the same day as hosp. dismissal, but I think that's changed esp if the pt needs oxygen or other equipment for care.


----------



## robin416 (Sep 8, 2013)

I think some states have different criteria for the Home Health services, same for hospice. The group we had and will have again did have a 24 hr nurse. What we need is more physical support. He just doesn't have his act together enough to walk from point A to point B without some serious help. I'm just not big enough or strong enough to be that person.


----------



## nannypattyrn (Aug 23, 2015)

Sure, I was just thinking plan B in case he didn't get to go to rehab.


----------

