Hi All,
I'm new here and have a question I wanted to share that I've been pondering for awhile. My mother has dementia and has been living in a nursing home for several years. She has been in a wheelchair for several years, but until a few months ago was still able to transfer out of it with the help of two aides. She now requires a hoyer lift as she has trouble bearing weight. She is also incontinent. Though her short term memory is shot and is sometimes confused, she is alert and mostly lucid though has speech issues and is hard to understand for some people. She was hospitalized a little over a month ago and developed aspiration pneumonia which she did recover from. However speech therapy assessed her and said she had swallowing issues and was an aspiration risk even w pureed foods. Because of this and her history of pneumonia she was eligible for and put on hospice. She is very stable however and not near the end, in fact hospice nurse has cut her visits back to once a week. Her appetite is decent considering she's on pureed foods and thickened liquids.
Prior to the hospitalization her aide would get her up for breakfast and she would eat all meals in the dining room and attend both morning and afternoon activities. Now they are feeding her breakfast in bed and not getting her up till late morning or right before lunch. Sometimes they are keeping her up for afternoon activities and sometimes she is still taking an afternoon nap.
I'm trying to sort out what is best for mom versus what is best for the nursing home and this particular aide. And also if I should also consider what is best for them as it might help her get better care. Her first week back from the hospital she was in bed for a week which I think was needed for recovery and I wasn't even sure she would make it. Mom then had some behavior issues in the morning so I also thought let's her sleep in and she didn't seem to be complaining about not getting up. However that's improved w a med adjustment along w her appetite and we decided to have them start getting her up for lunch and dinner w a nap in afternoon if needed.
I'm starting to visit in the morning to see if she is awake while still in bed and today she was wide awake and conversant w me. I heard she was also wide awake yesterday at the same time. One concern for Mom staying in bed is that I don't believe they are rotating her position making her a risk for bedsores, tho her skin is still good so far. The other is that she is missing out on more social interaction w others. On the other hand she isn't complaining about being still in bed either. I haven't asked Mom this yet.
Part of me wants to just let this matter go and not think about it anymore....and let them continue to get her up for lunch and afternoon activities hopefully and dinner. That's the burned out caregiver in me who has had years of overseeing multiple hospitalizations and issues w mom. She's older and perhaps the extra rest is good for her and she can still get the socialization from afternoon activities if they keep her up for that. I'm also concerned because I'm concerned that Mom will not be toileted enough if they get her out of bed. Toileting requires using the hoyer lift with two aides to put her back in bed. Though the director of nursing has told me Mom should be toileted every 3 hours even while requiring a hoyer lift and there shouldn't be a problem with them putting her down in bed and getting her back up again. I have observed this to not be the case consistently. It seems to happen for sure if I request it and happen to be there. Obviously I'm not there all the time so perhaps it's happening more than I think, but it's disheartening to see it not happen or to discover my mother in a soiled brief. And I'm not even sure how often Mom is toileted when she is still in bed even.... The 2nd shift supervisor even told me that some aides are better w following this up then others...
Part of me though is bothered as I feel like not getting her up has to do with what is easier for her aide. In fact one of the nurses happened to mention that this aide has a lot of "heavies", people requiring hoyer lifts to get out of bed...Residents that are lifts require more time and it takes two aides to transfer them. If they were to get mom up for breakfast- it's during their busiest time. So the work load for this aide might be heavier than for other aides. Also mom should be toileted before lunch, but that requires them putting mom back into bed to do this and get her back up again for lunch- again more time. Additionally I know her aide is older and has some physical issues so I feel like she is trying to minimize her workload though perhaps this is understandable given the "heavy" residents she has?
Curious if anyone has dealt with a similar situation or has suggestions. Our hospice aide has been a help with keeping an eye on having Mom changed though she's not there all the time.
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I haven't had to address this kind of problem. I think I would ask for a meeting with the patient coordinator/director and discuss my concerns so we could make sure we were on the same page. Ask if her chart indicates when her clothing/diapers are changed and when she is transferred. Her comfort is the most important thing and I would not hesitate to make a huge deal about it until I was assured she was being give proper care.
Would getting up in the morning and socializing be more "comfortable" for her mentally than staying in bed? Would starting the day gradually with breakfast in bed feel better? That is really the question here, isn't it? It is not about which is likely to help her get well sooner. She is never getting well. It is not about which is better for her medically. The goal is comfort. Which is more likely to improve the quality of her life, however long or short it may be?
Bedsores is very definitely a comfort issue! Very glad to here she has the air mattress. Being changed regularly is a comfort and dignity issue. These are things to keep an eye on.
But whether she should be getting up at 9:30 or 11:30 is not so clear cut. Your plan to keep an eye on it and decide based on what you observe seems sensible to me. But, please, please, do not be consumed with anxiety or guilt over this decision. Do your best and move on.
My mother is a two-person-and-a-lift transfer. She was on hopsice care in the nursing home for several months before she was discharged from that program. It is a very sad and helpless feeling to have one's mother on hospice! We keep thinking there must be SOME way we can make a difference, SOMETHING we can do. It is very hard to see Mom in such a situation. Certainly don't stop being willing to advocate on her behalf, but there is also some grace in accepting that we are not in control of all aspects of Mom's health.
Focus on What will make her more comfortable? and you'll be doing all you can.
Give a Hug, they do get mom dressed in fresh clothes and I've noticed they have her top on for breakfast and when they get her up for lunch they finish dressing her. The issue has been more about the actual getting up. Looks like this rehab experience has been challenging for your mom. I can't believe the aides would leave her in the same clothes at night. I'm also puzzled as to why they won't get her into a chair if she's supposed to be getting up for rehab. I'd think the therapists would want her out of bed. Have you talked to the occupational therapist? That would be the one involved in improving her ability to eat and use her arm. Doing that in bed doesn't seem very therapeutic. I'd find out what the OT's goals are and if it has to do w improving her arm and eating function see if they can help advocate for you that she gets out of bed.
Mom may possibly be resisting, and you're just not aware of it.
The other is this. I don't think it's your job to be concerned about the aide. I think your job is to advocate for the best possible care for your mom. If the DON says that mom should be toileted every 3 hours and it's not happening, then I want to know, very politely, why. If mom needs a different, younger, stronger aide, then the DON unit manager needs to make that shift.