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Old 10-15-2015, 07:31 AM
 
Location: Wisconsin
16,888 posts, read 17,196,676 times
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As some/many of you know from my thread "Vent, Arrgg, Vent" my husband fell down the stairs and suffered a subdural hematoma on September 4, except for a few days home and two days in a skilled nursing facility he has been in the same hospital (five different floors) for six weeks tomorrow.

I have been there every day (except for the three days that I had the flu) usually for about 12 hours, less when he was in hospital rehab & more when he was in intensive care. I have stayed overnight several times, for example 7 AM Monday to 7 PM Tuesday. I have been helping my husband by making sure that the doctors/nurses/therapists/etc. are aware of his needs because due to his head injury he is often confused and disoriented (especially these past 3 weeks). Also by keeping him company I am the one stable thing in an environment that keeps changing, dozens and dozens of different nurses & nurses aides, dozens of different therapists (every floor has their own therapists) and at least ten or twelve doctors "in charge of his case".


========

I have told the staff numerous times and I asked them to put it in his records that since his head injury when my husband is asked a direct question he will almost always (probably 98% of the time) answer "No" even if the answer is actually "Yes". This has happened again, and again, and again throughout his hospital stay. For example, my husband will be holding his head and moaning in pain and tells me that he is in terrible pain. And, five minutes later the nurse will walk in and ask "Are you in pain?" and he will tell her "No".

Now, I have encouraged the nurses to instead say, "What is your pain on a scale of 1 to 10?" In that case my husband will answer truthfully (as far as I can tell), whether it is "No, I'm not in pain" or "It is a 3" or "It is a 6" or one memorable day "It is a 20". But, I have sometimes found out from my husband after my arrival that he has been in terrible pain. I will call the nurse and she or he will say "I just asked him if he was in pain and he said "No". Except for a few days, he has always been on a neurological floor where the staff should be familiar with patients with disorientation or cognitive issues. I feel like I am beating my head against the wall.I have asked that this be put in his file. Is there anything else that I can do?

During that time I have been instrumental in making sure that my husband eats, as I quickly learned that often it overlooked by the staff and he would not eat anything or just one or two bites. Obviously, you can not get or stay healthy if you are not eating or drinking.

Many times the nurse or nurses aide will pop in and ask my husband (and me) "Do you need anything? And, of course, my husband will say "No". A few minutes later he will tell me "I am really thirsty or I will notice that he is licking his lips and actually looks parched so I need to call the nurse/nurses aide to ask for juice. Is it really my responsibility as a spouse/visitor to make sure that my husband orders his food and eats?



Yesterday, I realized that my husband was still wearing his pants from Monday morning. I knew that he was really disoriented in the early morning hours on Monday, wanted his breakfast at 5 AM (and the kitchen wasn't open yet) then decided to leave the hospital so they gave him strong medication, Sunday night he had requested a shower on Monday morning but then refused it so he changed his pants & underwear but did not wash up. I was with him in the hospital room from 7 AM Monday until 7 PM Tuesday and no asked him again if he wanted to wash up or take a shower or change his clothes. Although, Tuesday a nurses aide just dropped off a fresh gown & towels. it was still sitting there on Wednesday (I got to the hospital at 10 AM).

Just before I left the hospital at 8 PM on Wednesday I suddenly realized that I am almost 100% sure that no one assisted my husband in washing up or gave him a bed bath or anything since Saturday morning (his deodorant, soap & other supplies were still in the plastic bag from the other floor of the hospital) . I asked the nurse and she checked the records and said that "The nurses aides asked him every shift if he wanted to wash up and he said 'No' ." I then asked if the OT (BTW, I did not see an OT even one time from Sunday to Wednesday & he is supposed to have therapy every day) had assisted and was told "The OT evaluation said that he could do it independently with verbal assistance, so they do not do it, the nurses aides handle it". The nurse hinted that since I was there I should make sure that my husband washes up. Is it really my responsibility as a spouse/visitor to make sure that my husband takes a shower or wash up?

Not that it is a huge issue, but it appears that my husband, who normally is very well groomed (he often puts on a sports coat just to go to the grocery store) probably has not washed up at all from Saturday morning until Wednesday night. The nurse said that is "hospital policy" that patients are "offered the chance" to get washed up every day. Well, if you "offer" it to a person with a head injury who will say "No" to direct questions is it really "offering it"?

In the huge scheme of things I know this isn't a big deal. But, it just one more aggravation.

And, don't get me started on the medication mix-ups! When he was readmitted Wed.night/Thurs.morning somehow one of his pills got omitted. Missing this medication may have exacerbated his anxiety & other problems. I asked the doctor on Monday if he had somehow missed a dose and the doctor said that he was not on that medication. I replied that he was on it when he was discharged on Monday, October 6 so whey wasn't he put on it Wednesday, October 8 when he returned to the hospital.

The doctor said "Didn't pharmacy go over his medications with you? You should have made sure that they were accurate." I told the doctor that pharmacy talked to me 2 AM on Thursday morning, after I had been in the ER for eight hours and I may not have been totally awake and functioning. I told pharmacy to put him back on the same medications that he had been on when he left the hospital two days earlier. ARRRGGG!!! How can the hospital feel that it is MY FAULT that they goofed up my husband's medications? Is it really my responsibility as a spouse/visitor to make sure that my husbands medications are accurate? (BTW, he was on about 20 prescriptions & over the counter medications on September 4, they dropped about 8 and added 5, then dropped 3, and added 1, and added another, so it is pretty confusing for a lay person).


So, experienced caregivers what should I do? Talk to the charge nurse? Talk to a hospital administrator? Talk to someone else? Ignore it and hope that these "miscommunications" do not cause any more serious damage (like the missing medication did)?

Thank you for reading, letting me vent and offering suggestions.

Last edited by germaine2626; 10-15-2015 at 08:42 AM..
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Old 10-15-2015, 10:21 AM
 
6,413 posts, read 1,273,075 times
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I just want to say that if I were in your place, I would be furious.

I know this is not much comfort AT ALL, but I am so sorry for what you are going through, and I also really thank you for venting and putting your concerns on a public forum. By doing so, you are helping others and not just yourself and your husband.
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Old 10-15-2015, 10:38 AM
 
Location: Leaving fabulous Las Vegas, Nevada
3,855 posts, read 6,849,742 times
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I would talk to the hospital administrator, if nothing else just to get it off your chest.

I would also post a sign in his room to ask him questions that are require a choice to avoid no.

Maybe you could make a choice board for him: shower or sponge bath, water or juice, etc.

Sorry you're going through all this.
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Old 10-15-2015, 10:40 AM
 
7,910 posts, read 7,242,975 times
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I had therapists and nurses at the nursing facility ask me to write out instructions and leave them in her room. It was taped to the wall next to her bed.

As a caregiver, you're the person who puts it all together between the primary doctor, the hospital doctors, the specialists, hurses, and aides. I also had to deal with the dietician and the orderly who took her for baths. It became easier the longer she stayed (3 months), but some things just kept coming up repeatedly anyways.

If your husband can handle written instructions or guidance, that might also be of help.

I would talk with the nurse or nursing supervisor on this.
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Old 10-15-2015, 10:53 AM
 
2,632 posts, read 3,356,668 times
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Unfortunately, this is the norm.

In a hospital setting, you will not get as much attention to making sure your husband eats, drinks, bathes etc... as he would get in rehab/nursing home. They just have to prioritize helping acutely ill patients. Most hospitals are also understaffed.

So yes - unfortunately - almost all of the things you mention would be taken into my hands when my father gets admitted to the hospital.

Yes, unfortunately it is your responsibility to go through the medications with a fine tooth comb at the time of admission, and AGAIN the next day. Yes, it stinks to do this at 2am. So you do it again the next day. And the next, if needed. It is the norm for mistakes to be made. It is also the norm that some hospitals will not have every medication he uses (or uses substitutes), or delivers them on a different schedule (if you didn't clarify why your schedule is needed), or simply wont give certain meds (and you have to bring them from home and get clearance for them).

NEVER trust that the medications he was on in the last admission are correct. You never know what the current doctor will find when he goes back into the computer to find this "list". Mistakes are RAMPANT in the computerized medical record. Often you get discharged on different meds than you were on in the hospital, and then it is unclear which are "correct".

Yes, I think it is reasonable to ask to meet with the charge nurse. But you need to be very careful.... Remember, this is a hospital where people are acutely ill and the main priority is treating immediate problems and discharging patients as soon as possible. If you start complaining that someone isn't coming frequently enough to ask if he needs water/help with eating lunch, you may alienate them.

So instead, explain the main problems, and ask... "what can I do... and what can WE do... to try to help these situations? What can we do to help my brain injured husband get the assistance that he cannot vocalize, but he needs". Medication mistakes MUST be fixed. Pain control MUST be fixed. Maybe, a sign is placed on his front door of his room to remind the nurses that they MUST show him the pain chart/smiley faces/scale when they ask if he needs pain medicines. But even better, you should be talking to the doctors and making sure he is getting pain medicine around the clock if he has frequent untreated pain.

And then you have to let some of the smaller things go.

You ask if the occupational therapist (OT) can come to evaluate him, in light of his head injury, and discuss with them these problems and come up with a strategy so he can communicate better with nurses.

Maybe you bring in additional healthy, nutritious snacks. Ask for the nutritionist to come see him to give recommendations for the help he needs with eating. Ask the OT for advice here too. Ask that he gets Boost nutrition drinks a couple times a day. Make sure PT is coming to see him so he doesn't get deconditioned.

And you try to be there at change of shift every morning (hard... I know....) so that you can talk to the nurses/nurse assistant when they first come in. You gently let them know the main issues, and ask the appropriate person at that time for the help he will need that day (shower? help with a meal when you are away?). If you aren't there early, then when you arrive, ask to talk to the nurse's assistant to review the day needs. But don't bother the nurse until they come in to give meds, if possible.

You try to be creative. Set up lunch time as a time for visitors/family to come (especially if you wont be there) and have a "check list" for them. Make sure he has water, make sure he eats, make sure he gets his meds etc... Ask if a volunteer from the hospital can come to see him to help with a meal.

It is stressful, exhausting and at times, infuriating. But it is a dance. You are asking for help, and honestly.... most people working there are trying to help. They don't know your husband as well as you do. They can't read his mind when he says "no"..... so you have to be there to help him.

And bring the staff donuts to say thank you, so they never forget you.... or your husband.
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Old 10-15-2015, 11:51 AM
 
293 posts, read 436,217 times
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It is scary and sad to read this, although I guess not surprising. The scary thing is that many of us don't have a spouse who will be there 12 to 24 hours a day to make sure our needs are met and our medications are not screwed up.

Along with dealing with the most acutely ill patients, the nursing staff are responding to the most assertive, demanding patients first - the ones who lean on their call buttons until somebody answers them. Like my mother, when she's in the hospital. Demanding attention constantly even while the woman in the next bed is deathly ill and the woman's daughter is sitting by her mother's bedside, quietly crying and holding her mother's hand.

Your poor husband - unable to assert his needs because of a head injury. It's awful, but not surprising that he's getting short shrift. I think the answer is - the hospital staff is probably not expecting you to do much of anything. They're expecting your husband to speak up if he needs something (which is unrealistic) or just wait with his discomfort and his unmet needs until they get back around to him. He's lucky to have you to advocate for him.

I do agree with the idea of putting written instructions on the wall in your husband's room. The room staff changes with every shift and you can't be there to explain to every one of them, even assuming they'd remember what you said.

Hope you're able to get your husband out of there very soon!
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Old 10-15-2015, 12:03 PM
 
Location: Hampstead NC
5,500 posts, read 5,035,364 times
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Your story doesn't surprise me. Hospitals are terrible places for sick people. It's like a giant jigsaw puzzle thrown on the floor. Each piece attempts to do its part, and many do it well, but without the complete picture.....

I would make a big freakin sign on a poster board and put it over his head: IF YOU ASK HIM A YES OR NO QUESTION HE WILL ALWAYS SAY NO! Please use a one to 10 pain scale or just TELL him what to do instead of asking.

And put a big smiley face with a head bandage on it.

God bless!
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Old 10-15-2015, 12:23 PM
 
16,992 posts, read 20,598,336 times
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Quote:
Originally Posted by Stagemomma View Post
Your story doesn't surprise me. Hospitals are terrible places for sick people. It's like a giant jigsaw puzzle thrown on the floor. Each piece attempts to do its part, and many do it well, but without the complete picture.....

I would make a big freakin sign on a poster board and put it over his head: IF YOU ASK HIM A YES OR NO QUESTION HE WILL ALWAYS SAY NO! Please use a one to 10 pain scale or just TELL him what to do instead of asking.

And put a big smiley face with a head bandage on it.

God bless!

Excellent idea about the sign.

I suggest OP you talk to someone in administration. Don't get emotional, stick to the facts and give examples on what you mentioned here. And if you can find something positive to say to throw in there such as "I have to tell you Mary the night nurse is amazing" to balance out your real issues, that helps.

I can totally relate to what you're saying as I have been there.

And sometimes you have to get tough. That is your trump card when all else fails.

I had a situation with my late mother who was laying in wet sheets, I was the one who noticed it. I went to the nurse's station and they said they would take care of it, more than an hour went by so I went back. Same nurse, now she tells me "I don't have any CNAs on the floor"....I said "I don't care if the CEO has to change it, I reported this well over an hour ago(this hospital was mostly empty on this floor) someone needs to take care of this...THANK YOU".....they took care of it.
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Old 10-15-2015, 12:58 PM
 
3,758 posts, read 10,598,467 times
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while i agree with others that unfortunately this is not uncommon, I think that you should be reporting this higher up the chain. (Admin, Head of Nursing, someone).

There's no excuse for them not managing his pain well when they've been informed, nor for not attending to hygeine, nor for not making sure he is eating --- never mind the medicine craziness!!

that said - if you're there, yep, they'll expect you to assist.

Agree, that as you're noting the things you want to improve you should be calm, professional and say "How can WE address this issue, how can WE make sure my husband's unique needs are addressed" and also as the other poster said - compliment anything you can honestly compliment... "I want to make sure my husband has nutrition assistance, because your baked chicken is delicious and I'm sure that such wonderful meals will really help him on his way to recovery".

Lay it on thick.

But bring up the excellent points you've made. The hospital should do better.

so sorry its yet something else on your plate. I think we're all frustrated on your behalf!
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Old 10-15-2015, 01:05 PM
 
Location: Fort Lauderdale, Florida
9,080 posts, read 8,217,916 times
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My husband was in the hospital for eight days in April.

I stayed with him the entire time and the only time I left was after his lead doctor came in to see him in the mornings to go home to shower and change.

I took charge of when he ate, what he ate, what he wore, and when he bathed.

I never called the nurse to get him something to drink but went myself. I made sure he had a full bottle of water and gatoraide at all times.

I also kept healthy snacks by his bed for him.

I never once left his personal care (not his medical care) up to anyone else.

I brought my laptop and we watched movies on it all day.

I also had food delivered to the night time nurses station.

I have multiple nurses that are friends and know they are tired and overworked. I went out of my way to take care of him to free them up for medical stuff.

I'm not saying you are being needy or picky but know that nurses are stretched thin.

As a result the nursing staff went out of their way to take care of my husband.

Of course it could have been the Cheesecake Factory food deliveries.

Good luck and I'm sorry for your frustration.
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