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?
Jack Halpern, CEO
My Elder Advocate
1. A nursing home is NOT a hospital. Many persons do not understand this. The level of care is never going to equal that found in a hospital.
2. Most people go into a nursing home to die there. This is a reality. That's partly why the former term was a "rest home." They are not there to have a good time.
3. All nursing home patients need somebody to be their advocate and stop by at least once a week to monitor things. Sometimes it is necessary to "raise hell" with the nurse manager and drag him/her into the client's room to make them see what YOU are seeing. Take photographs, if necessary, and put things in writing.
4. In the case of the woman in question in the story, it's possible that she has simply moved into the next stage of Alzheimer's and some of the changes are more related to this. For example, people get to a stage where they "forget" to eat or drink. If a person's thirst mechanism does not instill the desire to get a drink of water from the sink, then they will become dehydrated.
5. In most states, nursing homes are very heavily regulated - right down to the nutritional requirements of the meals served. They are not allowed to serve excessively salty or fatty foods and all meals must contain certain percentages of protein & carbs. At the home in question, it is probably the fault of the cook who is too heavy-handed with the salt.
6. Despite being heavily regulated, most nursing homes will try to find ways to cut corners to save money and thereby hire fewer staff persons. Unfortunately, it's the clients who suffer.
Before I put my father in a NH, I "shopped around" to find the place that gave the best care. It was a Mennonite-run facility that was impeccably clean and the staff was very caring. The clients were always well-groomed and freshly bathed. The quality of the food in the dining room was excellent & healthy - I even had a few meals there. It was also a lot less expensive than most of the other facilities I saw, in part, because it was located in a rural county 2 hours away from the nearest moderately large city. Think outside the box....and find a better facility. It sounds like the place being discussed in this article provides sub-standard care for its residents.
I would contact the Area Center for Aging or other state institution, they will want specifics such as how do you know her meds were late or that she did not receive hydration so be ready with times and dates. This will also get the attention of the profiteers, an investigator will be sent to review the complaint and a report placed on file. Request the medical records, even if you don't understand all the information, this is another signal you are a concerned advocate. I know this may be so stressful for you and that my advice is "hard nosed". You have my sincere regrets for your situation, my words are directed towards helping you to gain the dignity, respect and care level your mother and all elderly residents are entitled to receive. Finally, if we were talking about a child in a day care center not receiving their ADHD meds on time or given fluids, I'm sure more concern and public engagement would be heard. Both the young and the elderly should be given our greatest concern and protection.
I appreciate your sharing your experiences. I'm sure you've inspired many of us here to continue to be vigilant in dealing with nursing homes.
And I do hope you file a complaint against them if you feel up to tackling that - you may be able to save someone else from the ordeal you went through.
Thank you for sharing your experience.
After leaving her at 7:00 pm last night, insisting that her vitals be checked before I left, and after calling there to check on her at midnight to make sure she was going to get a breathing treatment, I got a call at 5:15 this morning from the nursing home saying they had found my mother unresponsive, and running a temperature of 102 so they were sending her to the hospital in an ambulance.
She was in septic shock, had bilateral pneumonia and CHF and didn't regain consciousness. She passed away in the intensive care unit just shortly after 6 pm tonight.
Please, if you have any concerns regarding the care, or lack thereof, at a nursing home, be vocal and persistent. Hopefully your persistence will produce a better outcome than mine. The only saving grace is that she didn't die at that place, and that she went naturally and peacefully, while I held her hand.
Please keep my family and me in your prayers.
Good luck, don't let them try and scare you into keeping her where she is, if there is some place better for her. And they will use any tactic that they think will work as not to lose the income.
With your Mom's hands and feet swelling, that can be a sign of congestive heart failure as can more confusion. One of my brother's friends mothers, she lived in her own home, I think called him to go to her home, or he went there on his own, I know my brother and nephew told me the son said she was acting very oddly, even had diarrhea, he said she needed an ambulance, she scoffed, but he called one, she ended up dying of a heart attack. And I will never forget that his main concern was how strangely she was acting. At the nursing home or hospital has she ever had her heart checked by monitors and/or CAT scans or X-rays? They can show an enlarged heart. But with the elderly they can have disorders that have symptoms not normally associated with particular disorders.
If you want to check out other nursing homes in the area go to http://www.medicare.gov/what-medicare-covers/part-a/choose-nursing-home.html