Nursing home guilt or a real reason for concern?

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A couple of weeks ago, it became necessary for me to place my mother in a nursing home. I won't go into the guilt this decision has stirred up, and I thought I was handling it pretty well, considering...

But for the past week and a half, my mother has deteriorated rapidly. Her first few days there, we noticed an improvement. But I went in one day last week and found her mental status altered. She was way more confused than usual, and she's talking all sorts of weird stuff. What this looks like to me is her past pattern of UTI/dehydration, which landed her in the hospital three times in the past two years. She is also collecting fluid in her feet and hands, and having some trouble with breathing.

I know she's not getting her Parkinson's meds on time, and who knows what other meds are being administered incorrectly or not at all. She's unable to lift a cup to drink from, so I rely on nurses and CNAs to keep her hydrated when I'm not there, and from the looks of things, that's not being done either. Her mouth is so dry, she can hardly talk sometimes.

I'm there every day to feed her lunch and dinner, so I know what times she's supposed to be receiving her meds. When an hour and a half has gone by and the nurses haven't shown up with the medications, I go looking for them. I don't like having to do that.

I've spoken several times to the nurses (including the Director of Nursing) about my concerns and they always smile in that patronizing way and reassure me that everything will be fine, but I know my mother. This is NOT her "normal."

I'm pretty worried. My instinct is to get her out of there. Is this just a sneaky variation of nursing home guilt, or is there real reason for concern?

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Yes, nursing home guilt is an issue and yes, adjustment time is needed. But when we use the help of a facility we should be treated as part of the care team. While the nurses may give the meds and the CNAs may do the heavy lifting, family members are often the ones who do many of the small things plus a considerable amount of the bigger things that make the resident's life worth living. Being on call for emergencies and structuring our lives around our loved one in a facility is caregiving.

Normally, I'd say this time for your mom is just an adjustment period but I don't like the patronizing way your concerns about medications were addressed (or not addressed) by the nurse. Medications need to be given in a timely manner. I also don’t like the fact that her issues point to the same things that she’s had in the past and these issues are being ignored.

This paragraph you wrote concerns me and should concern the nursing staff:
"But for the past week and a half, my mother has deteriorated rapidly. Her first few days there, we noticed an improvement. But I went in one day last week and found her mental status altered. She was way more confused than usual, and she's talking all sorts of weird stuff. What this looks like to me is her past pattern of UTI/dehydration, which landed her in the hospital three times in the past two years. She is also collecting fluid in her feet and hands, and having some trouble with breathing."

If they don't listen and take action to make sure that your mom is tested for a UTI, then I'd suggest that you talk to the administrator. Many nursing homes are outstanding, most are average, but some are very poor. That's why family members need to be advocates. Not adversaries, but advocates.

If you truly feel that your mom's needs aren't addressed even after you've tried everything, go to www.ltcombudsman.org and type in the nursing home Zip code. Contact the person listed. He or she is your representative. I'm hoping that you won't have to go this far, but I wanted you to have this information for reference.

Please keep us posted on how things are going as you move through the system. You're going through the toughest part of facility care issues - trying to figure out if they are doing the right thing or not.

Try to take care of yourself, too.
Carol
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As a nurse, you should be worried and I would remove her from this nursing home and place her elsewhere. Do not EVER feel guilty about asking for the care you know she needs, and placing her with professionals. Only until her health declined so quickly did you really know they did not live up to your standards of care and those of what is expected (normally) in the industry. Do not stop until you get answers and staff should always be willing to help your mother. If not, take her elsewhere so you can have peace of mind.
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No one ever talks about how the caregiving doesn't end once our loved ones are in a NH. It's different but we're still caregivers.

It's only been 2 weeks. Your mom could still be reeling from the move. Any kind of move at her age would be devastating and add the dementia to that and this is what you get. Give her some more time to get acclimated, to get used to her new surroundings and used to the new routine. Routines are very important with someone who has dementia and 2 weeks isn't really enough time to establish a new routine. You may see your mom level out as time goes on.

And like jeannegibbs said, guilt comes with the territory. Telling you that you have nothing to feel guilty about is easy but I hope you'll go easier on yourself. When my dad went into a NH I felt guilty too although I was unable to care for him at home and had no other alternatives. It's just part of caregiving.
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I believe there is time for concern and maybe a move. I have been in this same situation with Alzheimer's unit. I've been nice, I've been angry, I even tipped every RA $100 telling them I know they work hard for their money and I just wanted to say thank you. after 10 months and me leaving everyday in tears knowing the enviroment she was in, I took her home. I know soon, I will have to start looking again but for now, the pit in my stomach is gone. Trust your instincts.
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This isn't really an either/or question, is it? It can be both nursing-home guilt and something to be concerned about.

I assume that the decision to place Mother in a care center was because she was getting worse/exhibiting more disturbing symptoms/needing more care than she had before. She has a number of chronic conditions all of which do get worse over time. I can speak personally about the Lewy Body Dementia. That is a VERY up-and-down-and-up-again disease, with good days and apparent improvements mixed in with bad days, and the overall direction is downhill. So it is possible that Mother would be in the same state of confusion at this point no matter where she is or who is caring for her. Dementia gets worse. It is what it does. But it is a natural caregiver reaction to wonder if we did something or didn't do something that made it worse. Guilt seems to be part of the job description. :(

If this looks like a UTI to you, I hope you have asked to have testing for that. If it has happened to her 3 times in the past 2 years, then I don't think you placing her in a care center is to blame for it this time. Just advocate for testing and shake off the guilt about it.

Getting her meds late, assuming she is at least getting them, may or may not be contributing to her decline. Can you have a calm discussion with the DON, and go over her med list? Explain why the exact timing of each is important (if it is) and ask if there is a way to help expedite reaching the target times. For example, how many times per day does Mother get meds? Is there any way to combine some and shift timing a little and reduce the number of times? Would that help the staff? It is their job to give the medications when they are due (within an allowed variation) and that is exactly one of the services you placed your Mother for. Keeping her hydrated is their job, too. While being firm about expecting them to live up to their responsibilities, also let them know that you are sympathetic to their constraints and would like to work with them in any way you can to make this easier.

I think it may be too soon to consider getting her out of there. What can and cannot reasonably be expected in a nursing home can be kind of a shock. This is not one-to-one care, as a caregiver provides at home. But it is around-the-clock care by trained people. I'm just suggesting that the next placement may fall short of your expectations too, and it may be your expectations that need some adjusting.

Mother needs you as her advocate. I feel really sorry for folks who have no one to look out for their interests. You are right to be concerned, and Mother is lucky to have you there to investigate your concerns and take actions if needed. If you can't get satisfaction on when pills are administered and/or on hydration, talk to the Ombudsman, and even consider finding a new place. But I'd try to work this through with the staff, first.
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Without knowing all the details, I would agree that there is cause for concern. And I also feel that when you are caring for someone at home then you are a caregiver. When you are caring for someone in a nursing home then you become a care manager. You are now managing care rather than doing it all yourself. Wishing you the best with strength and love.
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The lack of attention is one of the reasons that I am bringing my mother who has dementia from a skilled nursing facility in Florida to my home in Texas for full time health care. Regular nursing home schedules with so many patients prevents more one on one time for physical and emotional therapy. I have health care agencies visiting now to determine who will care for my mother the best. Fortunately I have cameras inside my home so I can view at anytime of day how my mother is progressing and being cared for. Prayers for your situation.
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Nothing to add after the excellent answer by Ms. Bursack, but I have to tell you, I hate the patronizing part. I'm so sick of it, I've actually called people out on it, i.e., "Do I look stupid to you...do NOT patronize me".

About the meds -- I think it's part of the 'beast' of nursing home care, i.e., everything is on scheduled come h*ll or high water.

Strange, but nobody ever told me that the end of life would be like this. We are so shielded from seeing how people actually decline and in the end die that when we are looking at it up close, it's one heck of a scary thing.

I hate it!
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Yes, you do have cause for concern and should find another facility that can care for your mother properly. I'm about to move my father to another facility because the one we have him in now is just not providing the care he needs and we have been spoken to patronizingly as well. As soon as he got in the facility he started going down hill, in part due to them feeding him too salty food, when they know he is a heart patient and we've told them repeatedly don't give him bacon, sausage, ham, or other overly salty foods. And yet they continue to do so, thus leading to his repeated episodes of fluid retention. When we speak to the chef about this, he just smiles and says "don't worry we're gonna take care of your Dad". Sometimes it takes the staff a really long time to come when he rings his call button to go to the bathroom and he gets tired of waiting and gets up and goes without assistance, which having balance issues and being a fall risk is a scary thing. He had a fall in the bathroom on one occasion when he went by himself and bruised his head and I had to insist that he be taken to the hospital to be checked out. The nurse spoke to me patronizingly and said "well not everything is an emergency" when I expressed concerns about his injury. I went over her head and spoke to the head nurse, who addressed my concerns appropriately and had him taken to the ER to be checked out. Unfortunately that head nurse is no longer at the facility, so I now have no one in charge that takes my concerns seriously when something goes wrong. My father recently had an episode where he was retaining fluid badly and had fluid in his lungs and was wheezing. No one in the facility noticed and my sister and I again had to make the decision to call the ambulance. Now we have hospice coming in for a few hours each day and they are a big help in monitoring his condition so he doesn't wind up back in the hospital again. We were also disrespected by the director recently, when the hospice had brought in a hospital bed for him to try. My Dad didn't really want the bed, but they said to try it and if he didn't like it we could send it back. Well, he tried it for a couple of weeks and hated it. It was hard and was making his old war injuries hurt, so we asked the hospice to take it back. They didn't have a problem with this and said they would arrange for someone to come get it. But when the director got wind of this, on a day when we were not there, he had someone take my father's bed out of his room, leaving only the hospital bed and when my Dad protested and said "don't take my bed", he told him that this was his only bed now, and they placed his bed in storage. When my sister arrived the next day and heard what they had done she told the director that he had no right to take his property and made them return his bed and remove the hospital bed. The director told her they were trying to do what was best for him and that they have gone above and beyond to help him. He said if my father didn't like it there then he could put in his 30 day notice and leave at any time. So that is what we are doing. I feel in the time he was there, not only was his safety and health compromised, but that we were all disrespected. You have to go with your gut instinct, and if it is telling you that your mother isn't getting the care she deserves and needs, then by all means move her somewhere else that will. Our parents were advocates for us when we were helpless as children and now it is our turn to advocate for them when they are in this fragile and helpless state.
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I would be concerned about your mother's deterioration. My mother came home from a NH as our money ran out. She was close to being weaned off the ventilator until her 100 days of Medicare ran out. All of the sudden, she had a serious UTI, a case of scabies, and broncho spasms. She went into the NH in March 2013 and by September, I was advised that my mother would not be able to be weaned off the machine. She became depressed, said someone owned her, and slept during a majority of our visits. There was a family member visiting at least 5 days out of 7 days. After they changed her trach tube in December, they kept her on pureed food as they did not want her to aspirate food into her trach tube. They gave me a very difficult time during the discharge process, but I took her home this past March. Her condition is 1,000 times better. She is eating solid food, has had no broncho spasms, is on less medicine. The NH also refused to do any physical therapy on her after her first 6 weeks, as she was unable to travel to the gym on the first floor. She has had physical therapy at home, without a gym. It will take her longer to get back to walking again as the NH left her bedridden. She does sit in a geri chair, but we have to use a hoyer lift for the time being. You need to be on top of the NH regarding her care. I became friendly with the staff, but it did not do any good. They swept her case of scabies under the rug, even though we asked about the rash on her body. One or two of the staff members confided in us about what was going on at the facility about medical issues, but the people that run the floor, will only put up with so many questions/concerns. When I left, I filled out a form asking for all her records, and I asked the Social worker if the form was filled out correctly. Her response was yes. When she told me the amount of pages, I would receive, I asked if that was the entire file, and she said no. I had not asked for all of her file. I then had to search the internet to find all the technical terms to ensure I would receive her file, and then pay a notary as the form was not filled out at the nursing home. It was a horrible experience, and I am now her full time caregiver, as I had had problems getting long term care through Medicaid. Don't trust the staff. Take everything they say with a grain of salt. If she is not doing well, don't assume it is her medical condition. It is most likely the care she is being given, especially since she was doing well at home. Good luck. Make sure you have the number of the ombudsman. Call him if you need help, and get a good elder care attorney. At my mother's NH, the administrative staff was walking around and having the residents sign over their homes to the NH without any notice to the family. GOOD LUCK!!
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