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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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Cricket, you should notify the ombudsman and the Joint Commission on Nursing Home Accreditation about the substandard care your mother is receiving.
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Devoted15 - you may need to get very firm with the facility to ensure your Mom gets out of that bed. i go am at the facility at least 5 days a week, 4-5 hours each time - and it's like pulling teeth to get the aides to get Mom into a WC - just so i can take her outdoors while the weather was still so very lovely and sunny. i had to insist they dress her every morning, too. They weren't even changing her into a H gown at night - just letting her sleep in her clothes and wear the same clothes for 2-3 days. She's had shoulder replacement surgery and can't get out of bed on her own, nor even elevate herself to sit up, nor reach for the tray w/the food and water. She's completely at their mercy, even to go to the lav. i've left msgs, notes, came at 8am when they opened, tried to talk to the dietician, the unit RN, the head RN, the Dr., no one returned calls. She was admitted to ER with a raging UTI, creatine level 4.7, disoriented/confused/mumbling - lips so parched a droplet of water to give her moisture seemed to be scalding hot. Very painful, and they had to switch to a gel to ease the dryness [skin was falling off her very parched lips]. She was admitted. A skin check found bed sores on her bum, blisters on her heels, and pressure sore on her elbow, surgical arm [about a month old now - the blister popped]. IV fluids, IV antibiotics, and then potassium was added to the IV tree. She was put on liquids, and then a soft food [restrictive] renal diet. She didn't know her birthdate. They put on 'air boots' because of the blisters/bed sores on her heels. Within 24 hours, she was speaking in complete sentences! She was discharged 5 days later. This was a H*** she didn't need to experience. The aides kept taking the 'sippy cups' off her tray [she can't raise herself up and there's no way she can lift a styrofoam 16oz cup with one arm, laying down]. They put the tray where she can't even reach it, nor can she see what's on it. That's why i am heart-string bound to be there so frequently -- they just leave her lying there, unless i speak up: which i do, every day. It took a trip to the ER to get them to pay attention. i never realized how severe a UTI can effect someone - to the point of hallucinating. Bed sores are so painful .. and she's lost so much muscle tone, she's lost strength - but not the will - to do the PT/OT. Yes, she's oh so tired, but determined. i want Mom back home. Please don't wait for undetected bed sores or trips to the ER to get their attention. Right now, she's too weak to sit up in a WC for more than 45 minutes, so i 'take her for a ride' about 3 times a day. When i'm not there, i can't focus on anything, and often fall asleep before making coffee. i get as far as taking off my leg braces, and collapse. i trusted their telling me for 3 weeks about the UA : each test came back contaminated [why would it take 4-5 days to even get results, leaving a potential problem untreated?]; each time it took 4-5 days for them [allegedly] to get auth to have it repeated. Meanwhile, Mom's the one that suffered [lost muscle tone, bed sores, disorientation, dehydration, a raging UTI, potassium imbalance, creatine level of 4.7 ... while i was worried sick, buying and bringing every bit of food or drink i could think of. Blessings to you ~ and grab all the gumption you need to take care of your Mom, ok?
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Thank you Sunnygirl- Mom can sit upright in her chair for at least several hours. Sometimes she starts to tip a bit to her left if in there too long. Mom did get a new chair from hospice w a high back that can go back, not sure if that is a geri chair or not. I'm going to ask to see what is in her care plan and then I think you are right..bring my concerns to the director and see what we can come up with. They are super busy right now with the state in surveying them thru tomorrow and a new DON starting today..but hope to get to this soon.
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Is your mom able to stay upright in her chair? Is she in a gerichair? If she is not able to sit up, then I would imagine it is not comfortable to stay in the chair slumped over. I have seen it and it looks very uncomfortable to me. To me reclining in the bed, would be more comfortable.

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.
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Thanks Jeanne- so glad to connect w someone who has a mother in a similar situation- dementia- nursing home- lift status. Yes it is about what will make her most comfortable, including how long should she be in a wheelchair during the day, how much social contact she would like and unfortunately my concerns about her getting toileted. ...I don't mind the breakfast in bed really. My fear is that requiring the lift creates additional obstacles to getting her toileted if she is up in her chair. Anyways, good advice to not let the anxiety/guilt be consuming and to just focus on her comfort.
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Devoted15, hospice care is supposed to be comfort care. Even if there are no signed (to you) that she is actively dying, she qualifies on the basis of not being expected to recover or get better and very possibly passing within 6 months.

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.
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Thank you for your replies! Babolou- Mom does have an air mattress, that was provided by hospice and gives me some peace of mind, but I still think they should rotate her if they are not going to get her up in the morning...I think I'm going to have to get firm about them getting her up and toileting her. I just want to make sure she's fully awake and ready to get up...even if they could get her up in time to do some of the 10 am activities that would be nicer for her I think. She could still have breakfast in bed...I'm not opposed to a nap every now and then either as I know she starts to slump a bit in her wheelchair if she's been sitting a long time. I've been thru this a few times in the past with them resisting getting her up for breakfast after a hospital stay, but I always pushed them to do it. What's been different this time is that she's on hospice and her dementia is a bit worse so I notice I'm not pushing as hard to rehabilitate her or get her back to where she was as hospice is supposed to be more about comfort. But it's an odd thing when Mom is no where near passing on. Heck she could be on hospice a long time or even get discharged so it's affected how I'm dealing with this. MaggieM I'm going to check the next few mornings and see how alert she is and ask if she wants to get up. If so I'm going to see if they can start getting her up earlier.
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.
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i'll speak from my experience with Mom - in a NH for Rehab following a reverse shoulder replacement. The aides did NOT want to change her clothing -- even into a hospital gown. That's the EASY way out for them. It's not hygienic, and getting dressed/washed up in the morning is a basic human necessity. Especially., imho, for those in a hospital or NH. It designates a new day. They need desperately to realize it's a new day. One day rolls right over into the next, because each day is the same ... the staff may change between morning / afternoon or weekend, but time is the same for the patient. i had to INSIST that they dress Mom each and every morning, and also she has PJs at the NH, she can sleep in a hospital gown [being mindful of her surgical arm, of course!]. i found her in the same outfit on 3 occasions, for 2-3 days in a row: she'd worn it consecutively in the day and slept in the same clothing!. Her mental status has changed since they started dressing her in the morning, and putting her in a gown at night. She told me she's sleeping better too, because she knows it's nighttime. Remember, the meds and your Mom's mental state might be severally impeding her awareness and choices. But i believe you'll notice a positive change -- be more direct or firm: your mom needs to know a new day has come. It's good for physical hygiene and mental health. If you recall anytime when you were sick, and fell prey to lazing about in jammies or sweats for a few days, you might recall how much effort it took to have the discipline to get dressed. Believe me, if the aides don't have to do it, they won't. Encourage your Mom to "get on a new duds" each day because she looks lovely in her outfits. i told the NH / nurse's station that for hygiene and to help my Mom realize a new day has dawned, i want her changed each morning and nighttime. i'm still trying to get them to get her out of bed to sit in a chair to eat [she has only one usable arm] but i have to find out if she's not eating because she doesn't want it to spill on her -- why would they want someone to lay down and eat? [grrr] Blessings ~ and your focus needs to be on your Mom - be polite with the aides, but don't worry - they are very well paid to do their job.
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I think I'd take my hints from mom. If she seemed cognizant of the fact she was n bed longer, I'd ask that she be up and dressed for breakfast. If I came at 10:30 AMand she was in bed and wet? I'd insist she be up for breakfast. Otherwise, I'd probably leave it to the aid.

Mom may possibly be resisting, and you're just not aware of it.
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There's two things I'm going to address, because I have a little bit of experience with them. One is that your mom should have an air matress that changes her position. I don't know what you need to do to get one other than speak to the DON. This has kept my mom from developing bedsores.

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.
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