My DH isn't complaining about anything that has gone on since he went into nursing home, but I have been vocal several times already. He is in room with an invalid that is transported to meals and such on a gurney. That gurney for the first three days was about half way into my hubbys half of room. Also he head oxygen that is always in front of my hubbys bed. Yesterday I rang bell and wen aid arrived I pointed out to her the gurney was on my hubbys side of room. She said I can show you how to fix that. She moved gurney over to other side of room. I told her, no I won't be moving the gurney, nor will my husband. Also the poor man babbles all the time. Na na na na na etc. I went to head nurse and told her I want him another room. Of course they don't have one available. I told them I'd give them a few days. He didn't ever get in bed last nite, they said he refused and they can't make them. He's had terrible back pain today and of course sleeping. This is not working out so good!
They do need to change the room. That set-up is not appropriate for your husband. In terms of refusing to go to bed, did they keep him with the staff near the nurse's station so they could watch him? That's what they used to do when Larry was in Rehab. and simply would not settle. If your husband has bad back pain (from being up all night?) I hope they medicate him with something. If they are not treating the pain, I would complain. Loudly.
Dee, many of us have had to deal with problems at care facilities, and various approaches have been tried. I wish I could remember the successful ones — I'm hoping someone will step forward. I have this vague remembrance that one facility had a patient ombudsman. Some Directors (of Nurses) can be helpful. So much depends on the facility itself. You may have to find a new one. Someone else mentioned hiring a manager to help place the patient in the most suitable accommodation. One thing I do know is that you have to be vigilant. At the same time, you can't afford to antagonize anyone. It's a tricky place to be in, and you have my sympathy.
When hubby was in rehab he had a similar situation with an unsuitable roommate (swore all the time, muttered incessantly, etc.). Whenever there was a problem I spoke with the head nurse in his wing and then quickly escalated to the DON (Director of Nursing) and/or the facility Director. I was the bitch wife but didn't care. I wouldn't waste my time speaking with the aides, they are not empowered to do anything and unfortunately in my experience many don't want to be doing the work or are not competent. Most of the ones in the rehab facility my husband was in really didn't care about the patients. Sorry to paint such a broad brush but in our case it was true.
If talking to the above people doesn't get results for you then there should be a state ombudsman for nursing home complaints that you can contact. Others here have hired a geriatric care manager to help with placement if you are considering moving your husband. Just make sure the geriatric care manager does not have an affiliation with any facility or placement services because if they do, they will get a "kick back" from the facility for placing your husband there. A BIG conflict of interest in my book.
I have been very verbal to DON,, and facility director. They tell me he will be moved as soon as someone is dischgd. I haven't discussed new problems of bedtime issues or backpain. He was walking fine, now can hardly get around.i have been quite the bitch, but I'm also so torn up that I put him here and now look.i knew the I've wouldn't be a piece of cake, but I never expected these problems.
I'd phone your husband's doctor about DH's pain and lack of mobility. My husband's doctor was most helpful when I let him know about changes. The nurses hadn't let him know.
In the nursing home, Ky's husband is probably being followed by the house doctor, and is probably no longer being followed by his own former physician. It's possible the floor nurses have not reported the pain and impaired mobility issues, perhaps not realizing (because they don't know the pt. well yet) that this is not only not normal...but it is a significant change that needs to be addressed ASAP. Kentucky, make sure you make the staff aware that these are new problems that surfaced after he was admitted to the NH. They need to be addressed immediately. If nobody does anything, call the State. That should get them moving. There is most likely some kind of hotline number to the State of Kentucky posted around the building.
I am not too happy with their answer to you about moving your husband to a different room "when someone is discharged." They need to move some patients and beds around so that the roommate is with someone appropriate for him...and your husband is also with a new, appropriate roommate. Keep an eye on that situation.
And in the meantime, be researching other NHs, so you can make a jump if you need to. When my grandmother was placed, the family accepted the first available bed somewhere because she absolutely could not go home. But the place was really not great, so they moved her as soon as they could to a nice place affiliated with her church, that she just loved, and where she eventually died. (Age 92, Alzheimers. Sigh.)
I would put everything in writing every time you contact someone, and make sure you save a copy of everything. For us that was tremendously helpful. When need be, you have the backup, and not someone else's word. They must feel you are actively fighting (as you are doing) to get him the help he needs, and you won't give up.
Yes, document all your phone calls and conversations with who you talked to, the date, the time, and a brief summary of the conversation. Start a notebook, but do not let them know you are doing this. Make sure you know first and last name, and title...RN, aide, ombudsman, pharmacist..whatever. It is helpful even if you aren't having any problems with the staff or facility...keep your med. changes in there, a record of when he goes to his appointments, if any. Things like that. It's impossible to remember everything, year to year to year.
Good advice about documenting everything...it's important. I actually documented everything they said right in front of them during meetings. I prepared questions in advance, handed them out to everyone in attendance and actually sent an attendance sheet around for everyone to write their names, title and extension. Then after every meeting, I compiled a recap of what was discussed, commitments made (if any) and by whom and distributed a copy to all attendees. Yes, a bit aggressive but in our situation it worked. My husband was only in for a short rehab stay (4 weeks) and I felt it was necessary to get their attention. Hence "the bitch" title, Also the social worker when DH was released to home sent paperwork to the home health nurse that read "patient is aggressive, wife is very difficult. Good luck".
Another thought ... if your cellphone is a camera, you can document your husband as he complains about his back pain, the situation he's in ... etc. My husband was also, unfortunately, loud because of his disease, but we were fortunate enough to have a private room and could close the door, so that helped. I'm sure you can't video any other residents, but surely you can video your husband, the condition he's in ... i.e. the noise in the room which is not appropriate for him, etc. This video taping was a huge help for us, because staff are busy and don't record things. By videotaping I was able to demonstrate to the doctor what was going on, and we immediately got the help we needed.
I guess the approach LFL describes would work if you are planning to take your spouse home, but if you want him to stay for the long term I don't see how it would help to antagonize the staff. I've always been able to deal with the unit nurses and the director of nursing by using the same approach I would use for any other matter in which a difficulty has arisen. I guess I would describe it as "business casual." We are so emotionally invested in our spouses' care, it's often hard to separate our personal feelings from the discussions about their care. When things do not seem to be going well or people make mistakes, I have to try hard not to let my anger take over.
Ky caregiver, Try not to beat yourself up. It's hard enough to deal with missing your husband without punishing yourself for everything single thing that goes wrong.
I always tried to be pleasant, and like LFL, typed up questions before I met with staff (Doctor, DON, etc.) just saying that I did not want to forget what I wanted to ask. After a meeting I also, under each of the headings or questions, wrote the responses. I brought in chocolates or muffins, or something like that periodically, telling them I really appreciated everything they did for my husband. There were a few problems, and except for one or two staff, they treated my husband and I very well. I think there are always a few you have to keep an eye on. With the video, I only videotaped my husband, his actions when he was upset, his back (skin breakdown), and I told them that I was doing this so that I could keep on top of things with the doctor. It is our responsibility to be the voice of our spouse when they can't do it for themselves. Ky, let's hope that things settle down. But don't let him down. Good luck. You are in such a difficult spot right now.
Good point, Myrtle. You have to be firm but pleasant, addressing the problem, not the person. (As I said, don't let them know you are documenting. Keep that to yourself, but if God forbid you need it, it is good to have it.) You don't want to be seen as the dreaded "bad family member." Antagonizing the staff, becoming verbally loud or abusive, getting nasty...big no-no's. You have to be professional yourself, in a sense.You are part of the health care team, too. Business courtesy at all times. As much as possible, be kind and supportive to the staff...although you don't have to carry it to ridiculous extremes. But having said that, you do have every right to expect...and yes, demand...a reasonable level of care that meets state standards. Of course it's never a perfect world, but you should not settle for poor care, or let problems ride because you don't want to rock the boat. You must advocate for your loved one--but there is a right and a wrong way to go about it.
Forgot to say: Be very careful about video or audio recording in a facility. There are huge legal issues involved, and you yourself could get in trouble if you inadvertently catch another patient or a staff member on video. I never cared personally as a nurse if anybody had me on camera or not, but our county would not allow any video or audio of us at work with the patients. The county attorney's rationale was that it was because a video or audiotape could be altered after the fact. It may be that when your loved one is in a facility, they don't want even his own family filming him without a signed release to protect the facility. I just don't know...and Canada may be different. But I think I would check with the facility before even doing a video or photo of your own family member.
Elizabeth, you may be right. I only videotaped my husband, and it was to ensure that the doctor knew what was going on with him. My husband had, as I mentioned previously, some wonderful, caring staff, and I did, with their permission take photos of some of them with my husband. One RPN was with him from the time of his respite, and then all during his stay in Long Term. She treated him like he was her Dad. I never ran into any problems, but perhaps one could. The staff knew I was doing it, and no one raised any objection. I felt I had every right, because I was looking after him, and I'm glad I did get the photos, because it's a reminder that in spite of the stress of their jobs, most of the people who dealt with him were caring. I don't regret taking any of the videos or pictures. Now I am doubly glad, because if necessary, I can prove his condition. But that's only my personal opinion. I really respect all of the above opinions and advice given. They helped us all along the way.
Marg, I'm just wondering if privacy laws are different in the States and in Canada.I have 40 some years of nursing experience in the U.S. Both in working for a public agency and for a private vendor agency, the aides were instructed not to take any photos of patients nor to allow themselves to be photographed by others with their patients. (Same for us nurses.) If a family wanted a picture of the aide, either alone or with a patient...or wanted the aide to take photos...of a 100th birthday party or whatever...the aide was to politely refuse, and notify a supervisor immediately. The rationale was that photos (or video/audiotaping, etc.) could be used in lawsuits if anything ever came up. It does seem a little paranoid, I guess...bending over backward to ensure patient privacy and also to protect the staff from any possibility of future litigation issues. (I don't recall that the issue ever came up in hospital work, but I'm sure it wouldn't have been allowed for the same reasons.) If a family member would have wanted to take a picture of just their loved one, I doubt that that would have been an issue. That would be their own business, I would think. I don't recall it ever happening.
Elizabeth, There may be different privacy laws. The staff at my husband’s LTC were not allowed to take photos of residents without the consent of family, and at functions such as outings, concerts or birthdays, they always requested permission before they filmed. I would never have taken someone’s photo without their permission, but they were aware that I was filming my husband. I showed the doctor and the psychiatrist the tapes, and it helped with meds change and getting him help from those special ladies who taught me how to soothe and calm him. That being said, what happened to us (a PSW videotaping him while he was in the bathroom for a bath/shower with ‘laughter and having fun”) was a gross invasion of my husband’s privacy and dignity – he would never, ever have agreed to that, and he was so far advanced that he couldn’t move or speak, and was probably afraid of the movement, so I’m pretty sure he was being ridiculed, and that’s why one PSW reported the video. Why take that video otherwise??? He passed on July 8th, but it came to light on July 17th when one PSW was shown the video by another PSW, so it was still in her camera. The story is that she became afraid when she was called in, and questioned. I am sure they will tighten up the laws now on videos and pictures taken by staff. I would have bent over backwards to try to understand. If I had been called in, told exactly what happened, what the discipline was, and of course, WHO did it; if that person had been fired if the video showed my husband was held up to ridicule or abused, then I think I would perhaps have let it go. But there were so many people/departments involved who fought at every step to keep any info from me. I’ve had to work very hard myself to try to uncover the truth, hire a lawyer, file Freedom of Information requests to the City, the Home, the Police, etc. Because of the secrecy I need to find out what happened. Someone has to be held accountable, as it feels like elder abuse. It just takes one rotten apple to cause problems for the others, but the rotten apples need to be exposed.
Dear Ky caregiver and others, Hopefully I do not sound like a know-it-all. I meant just to give my experience, and what helped us. Ky caregiver, I would never want to cause you problems when your plate is full - just meant to help. What worked for me may not be applicable to you. The folks on this site have been so helpful with their advice, and I benefited from it during my husband's illness. Just wanted to contribute. I wish you the very best, and hope I did not add to your worries. Margaret
Thank you all for your comments. I was very unhappy all weekend with some of the things that happened there. I made many trips at different times! Today I told the unit manager I wanted a meting. I was told they would talk to me Thursday. I told them I would not wait until Thursday. the Director, unit manager and social worker met with me. I told them my top c/o was room. They re moving him Wed. We talked about a few other issues and I feel they listened and will address problems. I wrote it all down as you gals suggested. And so did they. I left feeling changes will be made. so appreciate your comments, I know im not the firsat one with these kind of issues. Several of you are nurses, so am I. I think we are some of the worse to deal with, dont you? My hUsband is doing very well in spite of these problems. Of course he thinks im in there also, in womans section.!Im interested in knowing what transpired that you put your spouse in nursing home. My neck and shoulders ache constantly, and I have weakness in both hands, tendonitis. My husband couldnt get up by himself.
I don't know that we're the worst to deal with...it's just that we know what good care is supposed to be...and we don't put up with any of the facility's baloney. (I kept Larry at home, so I can't speak to the placement reasons. I was 25 years younger than he, and a nurse...and he so, so wanted to stay home. I knew how to pull together a home care plan, and that's what we did. He ended up dying at home as a Hospice client. The care just about killed me, and has changed my life profoundly...and my health has still not totally recovered. I would not generally recommend that others do what I did. But our circumstances were unique...what's done is done...and I'm mostly looking forward now...not back.)
Ky caregiver, you wrote, "Im interested in knowing what transpired that you put your spouse in nursing home." My husband was 88 and insisted that he be taken care of upstairs. He didn't not like strangers in our house and fired every care aide I brought in — he wanted me to take take care of him. I was 75, with ankylosing spondylitis ( a form of rheumatoid arthritis), and when he had a spontaneous compression fracture of his coccyx and was hospitalized for one month. I knew I could no longer manage. I placed him as soon as I could find a place for him. There had been no help from his children, and it was clear from them that they were not interested.
Ky caregiver, you wrote, "Im interested in knowing what transpired that you put your spouse in a nursing home."
There was nothing specific that occurred that prompted me to put my husband into LTC. (My father had Alzheimer's in the 1980s so I knew first hand what was involved and that I would not be able to care for him at home. In his last year at home, his most challenging behavior was his constant activity and restlessness. Even though I had day care 4 days per week and an aide one day, I could not keep up with him. Sometimes he would escape from the house while was getting dressed in the morning, sometimes I had to drive him around at night when he wanted to go "home." I felt like my adrenaline was constantly spiking. I had no experience with hands-on caregiving - I never had children - and although he was not incontinent, he began to my need a lot of help with bathing, dressing, tooth brushing, etc. Also, I was exhausted all the time. The facility I wanted to admit him to had a year-long waiting list so I had signed him up well in advance and at some point I realized that it was time to put him on the "active" list. Things went fairly well when he was admitted and it did not take him long to adjust to the move. What astonished me was that he was actually happy there. Maybe that was the reason I did not feel any guilt. But I did feel great loneliness and grief that he was no longer in our home. The only other thing of note was that after he was admitted, I slept for hours and days and weeks. I did not realize how exhausted I had been. Even though he is better off there and happier than he would be here, it still does not feel right that he is not with me.
What transpired for me to put my DH in a nursing home was the constant falls. I was in the ER with him each week, and finally the hospital social worker told me they would no longer put him in rehab, that I needed to make a long term plan that included a nursing home. I placed him in the nursing home thinking we would move from there to assisted living, but the nursing home staff told me no assisted living would accept him and I had to place him in a locked memory care center. This news was devastating, but it was clear he needed 24/7 care. I had already suffered a back injury that required surgery, and was ultimately unable to get him off the floor. He had begun falling several times a day, and even fell out of a wheelchair, so it was just impossible to keep him at home.
My husband doing well, I've heard no complaints from him. He asked me to stay a little longer with him yesterday, and I did. The first indication that he misses our home and me. I know he is so bored. There is just not much for Alzheimer pts to enjoy, so sad. I'm taking him out tomorrow. Going to our daughters for Thanksgiving!
Ky caregiver, Does your husband like music? I know a few of us on the site got MP3 or IPODS and recorded music that our spouses enjoyed, and that helped. If you haven't already, you might think about it. Good luck!