82 year old mom in skilled nursing home has congestive heart failure, copd and moderate dementia ... she was living with me, walked unassisted short distances, up and down stairs, bathed, dressed and fed herself.
Went to spend holidays with brother’s family in November 2018. Caught cold, turned to pneumonia was hospitalized. Left hospital to nursing home for rehab on December 2nd. Back and forth with recovery, symptoms of pneumonia lingered eventually cleared but mom was too weak to come home.
We decided she would need to stay in facility since was not back to her previous abilities and we felt we weren’t able to provide adequate care...
In late December we started the process of getting her on Medicaid. She was moved to a long term care wing of facility, all forms of physical therapy stopped and she has been declining rapidly.
When I spoke with nursing staff was told they cannot force her to get out of bed and move, change clothes go to dining room etc.
She is now to the point of wearing diapers and barley able to answer questions, just extremely weak and losing weight, has low iron and is dehydrated. They sent urinalysis to be checked for UTI on Friday waiting for results.
The staff is always polite and seems competent most of the time. They come quickly when we press call button, her meals are on time etc... but I just can’t stop thinking she shouldn’t be declining so quickly. Are my concerns warranted or is it normal progression of her diseases and my guilt?
We have a care meeting on Thursday and I’m looking for advice on how to address my concerns.
Thanks for reading all of this.
Kathy the guilt filled daughter...
8 Answers
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I can see how difficult this must be for you, especially being 2 1/2 hours away. How fortunate you are to have a sweet SIL who is helping out. Yes, get your questions ready, even do some research if possible. Bring your SIL to the meeting as she has actually seen on a daily basis your mother’s decline. That your mother has declined is not up for argument. You, your SIL, and the nursing staff should work together to determine if this decline can be turned around or halted. I cannot imagine that vomiting after most meals is a sign of good health.
Your mother would not have been admitted to the nursing home if she didn’t qualify. My parents went through quite a bit of testing and doctor referrals. I repeat, this is a transition time for all of you - your mother, her family, and the staff. Yes, it is your responsibility to advocate for your mother and make sure that she is being cared for properly and if not, demand it, or remove her to another facility, but there could be a yet undetected medical reason for her rapid decline. Four months ago she was a functioning senior, but she had a very serious lingering illness, coupled with her previous ailments.
After getting more information in your recent post, if she were my mother, and I saw this rapid decline, I would demand that she be hospitalized for further testing, or that she be seen by the resident doctor. I don’t think I would even wait for the meeting. That vomiting, dehydration, barely speaking, and incontinence concerns me. The facility should have a doctor or nurse practitioner who is there daily. I would call the facility and ask that she be seen by him or her and report back to you. Usually, patients are only seen by the nursing staff unless there is reason for the doctor to step in. Has this been done? Please let us know how your mother is doing and how the meeting turned out. My parents have been in a nursing community for over a year now, and yes, there have been some bumps along the way, but I have not witnessed a major decline in them.
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We have talked to the staff about suggesting she get up and put on clean clothes vs. asking her. She would do it for us but over the last 2 weeks has become too weak.
She is on oxygen, her saturation is typically 95-98.
She saw her cardiologist in late December was told everything looked good, keep meds the same, come back in July. This was after the pneumonia cleared up.
The results for the UTI came back negative, they said elevated creatinine and kidney issues. They are cutting back her Lasix to see if that helps.
Like I mentioned, I’m 2 1/4 hours away, my sis in law is nearby and checks in daily. I’ll find out more Thursday... working on my list of questions now.
No, true, they can't force. But they must encourage. Where are they drawing that fine, ever-shifting line?
This is *incredibly* difficult to judge, even when you're there all the time. The one thing you can be sure of is that you are not guilty of making your mother chronically ill, old, tired, and frail.
When you go to visit her, do you have any success in motivating her to get up, eat, drink, sit up and take notice in general?
At the care meeting, it is reasonable to ask for a detailed account of her daily routine and how it is approached. If it's something you could manage to do, it would also be reasonable to ask to sit in as a quiet observer on some of those routines.
I'm sure you understand that her heart failure, combined with the COPD plus her recent setbacks, is almost certainly going to be the chief culprit in her decline. Would any medical assessments perhaps help to set your mind at rest? - have any been done? There is little point in subjecting her to a whole battery of investigations, of course; but on the other hand if an echo scan shows changes in her heart function, just for example, at least you will know with more certainty where she stands.
But after all is said and done, remember that the aim for everyone involved is to make sure that your mother is comfortable, not in pain, and not afraid. As long as those are true, anything else you can all help to add to her quality of life is a bonus rather than a goal.
You Did Not Do This To Her. Please don't be a guilt-filled daughter :( Hugs to you.
How is her mental state? How has she transitioned to being in the nursing home? I reread your post and can’t help feeling that your mother’s health was greatly affected by her bout with pneumonia. She may still be suffering residual effects. I would definitely bring up all these concerns at the care meeting. You can ask them for further physical therapy. At my parent’s nursing home, if a patient loses the ability to do something they were previously capable of, physical therapy will be ordered to see if it can be regained. I suppose there is a point that they stop with the therapy.
Let us know the results of the UTI test. A UTI can greatly affect them mentally and physically. Does she have to wear a canula with oxygen for her COPD? How is her oxygen level?
The staff is right. They cannot force her to get up, get dressed, etc., but you can ask that they strongly encourage her. We went through this with my father, where whenever we visited we would find him in bed. I suspect that when they came to get him up, they would say, “Do you want to get up, or stay in bed?” . Of course, worded like that, he wanted to stay in bed! We requested that they encourage him every day to get up. Now, most days, unless not feeling well, they get him up, dress and shave him and he eats in the cafeteria with my mother.
You are both going through a transition stage. The staff needs to know that you are going to be a regular presence there advocating for your mother.