Depending on your wealth of experience to guide me. We continue with the blessing (and I AM SO grateful) of getting personal care/aides in daily for incontinent mom. IMO, the care was neglectful by the aides as they were not you may recall adequately keeping parts not being bathed covered. I did speak to the nurse they report to, and at least for the next visit, things seemed improved. But now I feel things slipping back with less consideration and respect being demonstrated by not being concerned about taking the time and effort to make sure mom is covered, both for comfort/warmth and privacy, which she seems sensitive to even at almost 99 and with dementia, and which she is entitled to. I really don't feel I should have to supervise/speak to the aides. I have been up hours wondering the best course. Speak to the nurse again, ask if they need retraining? IF nurse could be present to demonstrate? Scale back on the bed bathing to 1x per week, assuming her private area is not soiled? Ask that it be only one or two particular aides who tend to this task? Take note of the skin condition and leave her alone, not apply the protective cream (MORE touching) until there is an issue (I know, that would take a risk, but maybe her comfort makes it worth that risk and with frequent daily monitoring it would be caught early on. Should I request new aides, complicate things by investigating and linking up with a different hospice provider? Mom is clearly distressed, often saying OWWWW! as they turn her (hard to know if she is truly in pain), tells ME to "get them out of here" or "get them off of me". This is the tough part for me because I feel even with the dementia she clearly has awareness and has the right to be respected, and her wishes to be respected. It is most definitely not the way I want my life to end, I want my autonomy and if and when I say GET OUT! I want people to get out! Although I know their presence and what they're doing is to keep her well. Also, do we/should we do anything in re to the fact that she's not been up on her feet? Should we hire PT privately? She was not bedbound prior to hospice involvement and bed being provided. Yet from weeks of this we don't know if she can stand and support herself, long enough to even get to a wheelchair (which we were not provided at this point). In addition I am following up on leads to get visiting MD...Hospice MD will be dismissed ASAP because I strongly disagree with her prescribing a black box anti psychotic in hopes of making mom more compliant with the ONLY time she is more agitated etc which is with aides. PS I am observant, and restraining myself from comments as aides work at least thus far; there just to hold mom's hand or keep her from interferring with or pulling on aides etc, and to take the laundry to wash and bag with soiled disposables to put in trash.
Mom does not need to be bathed every day, as long as you are making sure she is clean in other areas. 3x a week is generally what they do in ALs and NHs. Call the head Nurse again. If you don't get any satisfaction, then start looking for another Hospice agency. Have questions in front of you. First question, are your aides discreet.
My husband only had hospice aides come twice a week to bathe him, and often they were different people, so I always had to go over with them how he preferred to be bathed. They don't mind being told, as it's their job to make sure the client is well taken care of.
And as far as the protective cream, that is put on as a preventative measure. You don't want to wait until mom has an issue, as then it will be more painful for her. The aides also have to be able to turn your mom, so they can wash all areas. They should of course be gentle when they're doing that. The fact that you have hospice aides coming every day, I personally have never heard of. I was never given a choice with my husband, I was just told that they would be coming twice a week to bathe him. Perhaps if you don't feel mom needs a bath every day, you can ask to cut back to 2-3 times a week instead.
Also if mom is now bedridden(like my husband was)she more than likely won't regain her ability to stand or walk again. If it makes you feel better, you can do some simple leg exercises with her, if it doesn't cause her too much pain.
And last but not least, any medication that hospice prescribes, doesn't mean that you have to give it to mom. There were several instances when hospice wanted to prescribe different medications for my husband, and if I didn't agree with them, I just told them no, I didn't see the need. Again hospice is there to help you with what they feel is best for your mom. If you don't agree with any of it, tell them. You know your mom way better than they do, so please don't be afraid to speak up. Wishing you and mom the best.
Thank you for the info re meds...I know that to be true, And I was grateful to realize I could say NO to various situations re my own illness and recuperation. NO to repeated lab work that was unnecessary (and for which I will be paying off the bill for years to come, and no taking the meds if I didn't want to. Thanks for the pep talk. THE GOOD news is that the one health system was able to make an exception and so we are now on the path to get a home visiting MD in a couple weeks who is interested in both family medicine and geriatrics. And there is also an alternate if we don't hit it off. IT doesn't sit well with me for any MD to quickly resolve a situation by the prescription of a drug, let alone a black box drug that particularly warns against use in elderly or those with dementia. There are other more gentle drugs to use IF necessary and I believe in identifying a problem and working to resolve it, making the patient comfortable so there is no reason for the behavior someone feels needs to be medicated away. Thanks for the good wishes...We need all we can get. Today it was confirmed that dad does have macular degeneration but they are hopeful for a good outcome with treatment that was begun today.
Mom is agitated when aides are bathing cleaning her. What if this issue is that, with dementia, she perceives that what is happening is that she is being attacked in some way (because she is no longer responding rationally--I'm getting cleaned is a good thing). What if a low dose of seroquel eases the agitation and takes away the perception that she is under attack?
Yes, you should call nurse and report that the aides are again not covering mom. I'd be ANGRY about that and would tell nurse this needs to be fixed, now, or you will sadly have to find a different hospice organization.
BUT consider that seriously is not being prescribed to "drug mom into submission" but to take away the idea that she is being attacked or worse. Consider too that if aides are part of a different ethnic group, this may fuel mom's dementia-brain perceptions.
Me, I was grateful for psychiatric drugs at the end of mom's life as her anxiety about the IRS and Hell was off the charts and the cocktail of meds prescribed kept her calm and happy, not drugged.
Broken brains need and deserve some relief.