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Nurses have a lot to handle and I get this, but I stayed 9 days and nights with Mom and medications they gave her made her hallucinate. On day 5 after 36 hours of NO SLEEP, I could not take it any longer and I have a seizure disorder related to fatigue, so I informed the nurse that I had to go home to get some sleep. She said fine they would put restraints on Mom and put on the bed alarm.

Next morning I was there at 7:30 am and Mom had a bruise on her arm and the nurses kept making comments about "something my mother had done" the night before but NO ONE would tell me what happened with my mother.

That evening my younger sister and I were walking out to go grab dinner, while my older sister stayed with Mom. I was caught by a male nurse, telling me that I could NOT LEAVE MY MOTHER ALONE AND IF I WAS LEAVING THEN I NEEDED TO HIRE SOMEONE TO STAY WITH MY MOTHER!

I was shocked, as I had been staying with her day and night for 5 days already. I wondered what happened to individuals who had no one to stay with them and is this just how the hospital system works now.... if your parent has dementia, you have to hire someone to stay with them when you leave the room?

I sent a letter to the hospital and was called almost 2 months later and told they had just found the letter and would look into the matter. Today I get a letter from them telling me that they were referring some of the complaints to the "Chief Nursing Officer as well as an appropriate Peer Review committee to address any potential deficiencies or opportunities to improve the delivery of patient care with the involved physicians." They went on to tell me that the doctors were not employees of the hospital and if I wanted to file a complaint I could contact the Medical Board of California.

I basically got zero information from this letter and I think it was BS on their part to even send it to me. It answered NOTHING! It did not tell me what had happened to my mother or what she had done, it did not address my question as to...."Do I need to hire someone to sit with my mom, should I have to leave her for any period of time"..... It was a letter full of nothing!!!

I do have two sisters that both work. Neither sister could or would be there on the day I had to get sleep, and I had no idea that I was going to need to hire anyone to stay with Mom. I thought they could give her medication to allow her to sleep through the night, not send her into more hallucinations.

I have the uttmost respect for nurses and do not know how they do what they do, they are amazing and everyone was very nice that took care of Mom but i was there about 20 hours each day only leaving to run home and bathe and eat and catch a short nap then head back to relieve my sister who stayed for about 4 hours an evening.

Has anyone had any similar experience and how did you handle it? Is there anything I should say or do or go back to Risk Management and tell them their reply is not good enough?

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Damn straight tell them their reply isn't good enough! I get that hospitals run a tighter ship these days, but if your mother got bruised, you should get an explanation!
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As one who has worked as a nursing student in hospitals, I don't suggest you leave your mom alone. If you must, don't leave her alone over night. The restraints put on a patient are only adjusted every 2 hours and that is IF the staff remembers to do it. Her chances of acquiring a bed sore from not being turned is high. You can make as many complaints as you want, but if no one is there to ensure proper care, you cannot expect it. That is the harsh truth.

With my dad, we had someone there every night. I did not want him being tied down. The medications will cause hallucinations and if you are not there fighting it when it arrives she will get it anyway. Dilaudid caused my dad to hallucinate. It was bad. We went to lunch when it happened. When I came back and found out he was having a hard time, I saw a nurse bringing in a posey (restraining jacket) and ties for his hands. I told her, "Oh no, you're not getting an easy job tonight. I told you not to give him Dilaudid and you did it anyway. Put those restraints on him and you're going to have a problem with me!" After that, we took turns staying the night. You have sisters so have each one take a night. It's nothing compared t the sacrifice your parent has made all these years for you guys. We did it, working at UAW plants where there is never an excuse to be late for work, miss days, etc. She will get better care if you are there.
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hpygrl01: Her total stay in the hospital was 8 days. She was admitted for gall bladder surgery but the doctor only admitted her for observation then the following day came and told me she was releasing her to go home and Mom would have to just "learn to live with the pain." I was livid but she said they did not want to take a chance with Mom. Five minutes later a surgeon was standing at Mom's bed telling us that he could do the surgery the following day with NO PROBLEM! He was right the surgery was a breeze. Mom's heart began beating fast so she had to stay for 8 days to get that under control.

I did stay day and night but on that day there was no one available to stay with Mom and I did not think it would be the best thing for me to start having seizures while I am suppose to be watching Mom. This is the only reason I left her but I ran it past the nurse before I did it.

So if hospitals are not equipped to handle dementia patients and the family must be there or they must hire someone, does insurance cover in hospital care by the person you have to hire so you can get some sleep? Who would you contact to hire them to stay with your parent?
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I am not sure if insurance will cover it. You can contact the "Agency on Aging" in your area to find resources. I do understand you have a health problem. If it is too much for you, then it is. If your sisters do help out though, you will get more rest. I was the only one to stay with my father mostly. If it wasn't for the alarm bed I would have failed so many times. He had pancreatic cancer and was in the hospital almost every month of the year he had left before he died.
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Personally, I don't blame the nurses, but the doctors. Nurses have to give the medications as ordered by the doctor. If dilaudid is ordered, they have to give it. I don't blame any MD who refuses to do surgery on a dementia patient. The risks are extremely high as you see from your mother's cardiac problems. She may have needed sedatives, but could not take them due to other medications or the family objected to them. If sedation is refused and restraints are refused, and the insurance will not cover a one-on-one aide, the only other option is to have family restrain the patient IF they can. Sometimes this won't work either and the patient has to move to a psychiatric unit and be fully restrained. I'm so sorry you have gone through this, my prayers are with you.
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Hospitals are not equipped to handle dementia patients. Period. I hope there are exceptions, and I hope others will tell of positive experiences, but basically hospitals are not equipped to handle dementia patients.

There is a fine book called "Improving Hospital Care for Persons with Dementia" by Silverstein and Maslow (editors) with lots of studies and practical advice for improvements. But unless I knew that the hospital had taken those practical measures I would never leave a person with dementia without an advocate present. The problem is not maliciousness; it is lack of training on this subject and lack of time. The first time my husband was hospitalized after he developed dementia I stayed with him around the clock, trying to sleep when he did. That was a dreadful experience for me, of course. After that I told our kids that he could not be left alone and I couldn't do it alone. The next time we did it in shifts. When my mother (also with dementia) was recently hospitalized I insisted she not be left alone. I don't think my sisters quite understood that but they knew I spoke from experience and we did set up shifts. (One sister later remarked that she was glad we did that.) When she was released to a transitional care unit for rehab we set up a schedule so she had at least one visitor per day. By then she was far more lucid and calm.

HolyCow, please continue to pursue your complaints. Anything we can do to pressure hospitals to understand that their care of persons with dementia is inadequate is a good thing, even if it does not have immediate results. Meanwhile, try to have an advocate for your mother with her at all times when she is hospitalized. This may require someone taking off of work for a day, and should be discussed in advance, so everyone knows what to expect. Hiring someone would be a last resort, because it will be most comforting and calming for Mom to have someone she knows present -- someone who can sooth her and knows her quirks. But hiring someone is better than leaving her alone. Contact Mom's insurance company, explain what that nurse told you about having someone with her, and ask how/when it is covered.

Also, PLEASE don't beat yourself up about this! You certainly did the best you could. And needing someone with a hospital patient around the clock isn't exactly something they put in that caregiver's manual none of us were ever issued! We learn by trial and error. You have nothing to feel guilty over. You will simply learn from this experience and hopefully be able to take the next time in stride.
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Psteigman: If a family member such as a wife says to not give her husband Dilaudid and to call the doctor and inform her of the results before he is given it, then you cannot give the medication. It is against the law. Reference: Nursing Student
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JGibbs: You are correct on all points. There is not a lot of training for dementia, there is no time for dementia, and one should not (if possible) leave a dementia patient alone in a hospital. I feel there is a niche in the health care community for dementia personal care assistants. Especially with everyone living longer than what was the norm twenty years ago.
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Whether it is dementia or any other aggressive or non compliant behavior, if the patient is unattended, it will result in restraints or tranquilizers. With my dad all the "sedative" drugs they tried made him wilder. I would not allow restraints, so yes we ended up sitting with him 24 hours....not easy when you work full time.
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lsmiami, I am sure you are right, but chemical or physical restraints are not the only risk. A pleasant, "compliant" patient who simply can't remember that he needs help getting out of bed can attempt it and pull out IV lines or the catheter or fall on his way to the bathroom. A non-aggressive patient might be cowering in terror all night and whimper every time someone comes in.
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Jeanne, you are absolutely correct. My dad kept trying to disconnect the IV catheter, monitors and would have jumped off the bed. He did not have dementia going into the hospital, the scariest part of his amputation was what the drugs and trauma did to his mind....halucinations, impaired judgement.
He was paranoid, he wanted to escape ICU, post op.
Funny side note - he tried to bribe a nurse to break him out, with his life savings, offered money and provided correct banking details !
Having 24 hour attendance allowed us to get him off the myriad of drugs.....they tried many. Eventually his mind cleared up.
I agree hospitals need to better deal with the elderly. Sadly, most hospitals seem to be cutting back the number of floor nurses, making it difficult to care for "high maintenance" patients.
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Normally hospitals have sitters that they CAN call in if it is an emergency, but it takes 24 hours or so to get people scheduled in. In future, you need to call a caregiver company and schedule someone to be with your mother in the hospital at night, at the very least. Me, I have 24x7 caregivers in with my parents any time they have to be at the hospital. It's $18 - $25 an hour depending on where you live and worth every cent. This enables me to be free to balance the needs of my mother, who has dementia with the needs of my father - who last summer had colon cancer surgery. I saw many other elderly patients in the hospital who were confused and attempting to get out of bed and had no one watching over them. One elderly lady had somehow gotten trapped between the rails and the end of the bed and fallen asleep in that position half in and half out of bed. I saw another elderly man attempting to crawl over the rails. My own father was confused and wanting to go home but with the caregiver there with him at all times, it kept him calm.
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I worked as a nursing supervisor for many years and am going to give you the real deal. The attending MD can order a sitter for the patient. It is done on a 24 hour period and then must be renewed. Hospital administrators (bean counters - you know who you are) hate when the MD writes this order because the hospital then has to pay extra for a sitter and it causes staffing issues. They want you to hire your own sitter or be with your family member especially if they are confused and hostile. Impossible situation for most family members if they are still working or have their own families that need taking care of. If it was me I would tell the nursing supervisor that I was requesting a sitter because of the high fall risk. Use those words "high fall risk" and ask that it be documented in the chart. Then ask that the primary physician be called and an order written for a 24 hours sitter. You are not going to be popular with nursing administration but who cares. The staff will be happy to have an extra pair of hands. Otherwise you will have to pay for it yourself and it gets to be quite expensive. If the funds are there great - otherwise you will have to advocate.
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hadenough, Thank you so much for your answer. I had asked the hospital for a sitter, but didn't know how to go about forcing them to give us one. I was only told that one would be ordered if needed. The nurse at the hospital was constantly calling me wanting me to come back to the hospital - impossible as I am only one person, have a family and full time job. So, I hired caregivers from the company that cares for my mom. Interestingly, there was a sign on my dad's door that said "High Fall Risk", I didn't know that all I needed to do was call the primary physician to write an order for a 24 hour sitter. At any rate, I WILL keep this information in mind for the future. We are lucky that we can afford caregivers, but still, if it can be covered by the hospital, that's obviously a better option. Thank you again!
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Moxie - u are very welcome. If you have any questions or give you a hard time instant message me and I will give you the words to get what you need. The squeaky wheel in these settings does get the grease (or a 24 hour sitter.) Good luck. The nurse was calling you to come back because the supervisor could not or would not find a sitter. Force them- it is their job- you are a family member not a part of the nursing staff.
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