She is still lives in her condo, still has CNA only 3 mornings/week - refuses any additional paid help, though she has long-term care ins. When I posted last Fall, she had developed a CDiff infection after an in-hospital procedure to drain her hip bursa. After 6 wks in rehab, she insisted on returning to her condo. (I refused to take her home; she persuaded her aide to transport her.)
I was amazed at the time that yet again; she had appeared to be at death's doorstep but pulled through. She has been treated for CHF, stage 3+kidney disease, HBP, autoimmune bleeding disorder, a variety of infections & more for at least 15 years and has been hospitalized more times than I can count with stents in the ICU and multiple blood transfusions. She had serious mobility problems before then, arthritis & broken hip repaired 2 1/2 yrs ago, but was slowly & painfully walking with her rollator before the bursitis episode. Since then, she can only get around by sitting in her rollator and pushing with her feet. She has a wheelchair but won't use it - she can't clear her bedroom doorway with it. She spends most of her time in bed anyway.
Her hip pain has been increasing & she received 2 cortisone shots over the last six weeks - she had to find a new ortho to give them to her; her previous doc refused, saying her risk was too great for infection &/or bone collapse. The shots didn't help, her pain has kept increasing, and yesterday she couldn't move at all and was complaining of abdominal pain along with the hip pain - and looked terrible.
With great difficulty (& the use of a gait belt), her aide & I got her into the car and to the ER. Xray was clear, abdominal CT was clear, bloodwork looked good (at her usual baseline - how?!). She was hooked up to an external catheter since she couldn't move enough to get to the bathroom, even with assistance. She felt a lot better after a dose of Tramadol, and the ER doc said she could be discharged.
So, I'd like to thank you all for teaching me the phrase "Unsafe Discharge". I informed the doc that there was no way she could return home alone to her condo; aide was not scheduled again or available until Mon am, and I am not able to give her the assistance she needs. Doc relented, and admitted my mother for the weekend, with a referral for Mon to go to rehab for PT.
This, of course, is just kicking the can down the road again. My mother has been to rehab 5 times. She does the required PT there, when she goes home, they send PT to her condo & she does it there. When she completes PT, she goes back to spending her days in bed. She wears Depends, but I can't figure out how she's dealing with the bathroom situation when her aide isn't there. She can't dress herself, and there's no way she could put on a new pair of Depends. She informed me in the ER that she wants to get an external catheter for home use.
My mother is a retired RN (used to teach CNAs) and still making her own decisions. As I left last night she said: "I AM NOT GOING TO A NURSING HOME".
Thank you for reading this long post. It helps just to type it out. The only wisdom I have, for those who may be newer to this, is that your LO may very well live a lot, lot longer than you think, so factor that into your life plans.
HOWEVER, as a Phlebotomy Technician and a Phlebotomy Instructor, her blood work might look "good" or "okay" simply because it was not collected properly. There is an astounding amount of people whose job it is to collect blood samples that have the slightest idea of the proper way to do it, as to not cause the results to be off. There are also an astounding number of doctors who see a result that is within "normal range" but don't make connections between the one "high normal" and the other "low normal" that would indicate a problem. Being in the hospital, I would also assume Mom is on IV fluids. This can also skew accurate results by diluting samples. Some Drs and NPs order BMPs, they look okay, so don't order the CMP, which includes a lot MORE tests that would show them a lot more. They aren't hematologists so they aren't even aware of the intricacies in Hematology testing. They rely on the Scientists to note something as "out of range" and don't look deeper at each analyte's relationship to the next. They scratch their heads because patient has signs and symptoms of xyz, but the lab work "looked okay." While they forget that the lab scientists' job is to result and report results, indicate when a result is out of range, or positive or negative, it's not their job to diagnose, or look farther than that.
I couldn't even tell you to ask them to run the blood work again, and make sure they give you a nurse or phlebotomist that knows how to do it completely correctly, because those nurses or phlebotomist are RARE.
You are in the right place even if it is not an entirely comfortable place. Watching anyone decline for any reason is never comfortable, but decline comes to us all unless our lives end quickly.
My mother lived to 106. I had to look after me and if I were to do it again, I would put my needs first more often. You made a good decision to step back. There may come a time when you want to do more. For now be thankful you don't have to.
I'm really pleased that you've stepped back. You and your husband both need you.
You're doing everything right to ensure that nobody thinks that you will be taking care of Mum. So, if she is discharged (unsafely, imo and, I guess, yours) then that's down to whichever healthcare facility and practitioner made the decision.
My one piece of advice would be to speak with the care agency and let them know that you disagree with their aides ferrying your mother home. Unless the company is willing to take responsibility for what happens to your mum during the times that she is home alone, then they should not be enabling her discharge, seeing as she cannot live independently.
If they say that it is a private arrangement between your mother and the individual aide, point out that the only way your mother knows this person is through the care agency.
Also, remind them to be professional about this conversation.
Other than that, you will just have to let your mum make her own mistakes, until that independence is taken away from her. But it won't be by you.
Just be her daughter, not her parent.
Not ideal, but better than the 3 mornings/week she's had up until now. She's in that in-between stage where she needs more help than she'd get in assisted living (got to see that with my MIL) and she's not quite at nursing home stage - very frail, but not demented (yet, anyway). And she really, really wants to be at home (and has demonstrated several times that she won't hesitate to use her medical alert button).
Thank you for all of the advice, especially your observation, JoAnn29 that my mom has lived her life on her terms and wants to come to the end of it on her terms, and I should let her. I hadn't really thought of it that way before, but now it's the way I'm approaching this situation. And I've stepped back hugely.
Thanks again, everyone. This forum helps so much.
I told her if she wanted to go back home she needed to arrange for everything herself, I and my sisters were done with propping up her so-called independent living. Of course she was not able to do that and needed to accept the fact that the NH was the best place for her now. At least she is there with my father. Our situation was simply not sustainable anymore.
I will cross my fingers that the ‘unsafe discharge’ will work out well and that you will be able to place your mom in a facility. 🫰
You have a Mom who wants it her way. And she will die having it her way. Nothing you can do about that. Hey, she is 91. She would be miserable in a facility. Just let her have it her way. She is entitled to leave this world on her own terms. And you don't need to be there and watch it.
Glad your not picking her up itbshows that ur willing to take on the responsibity for her care. Anyone picking her up should be made aware of this. But you should make it clear to discharge that there is no daily care at home and you cannot be there for her. That its "unsafe" to discharge her.
I really appreciate the constructive advice and support that is offered on this site, but I do find it disappointing how quickly some rush to judgement. Not all of us are emotionally unstable enablers. Sometimes it's hard to know what the morally right thing to do is when assisting a parent, especially when you don't know up front that they may be lingering for years - and years. And when a parent is making their own decisions, a lot of it is out of your hands.
And yes, it's true: the most difficult parents last the longest.
You have steped back.
Excellent. A safe place to be!
If Mom refuses to do her rehab therapy, that's between her & the rehab staff.
If me, I would ensure my help level (ie once a week grocery trip ONLY) was noted by the SW & Nurse Manager.
While I could not control what fantasy tales may be told about my wonderfullness, I could be crystal clear on my involvement (or lack of).
My parents used to lie and tell them that I lived with them ( which I didn’t ) in order to get discharged sooner .
Yes. Rehab goal is designed to strengthen & return to best function. (What the person chooses to do/not afterwards is their own affair).
If a person is due to go home soon, lives alone, but is still deemed 'assist x 1 person' - then they have a problem.
Yes, I believe the rehab facility has a duty of care is ASK if they have the required assistance they need. Note: ASK.
Q2: "the team can give a care plan recommendation, but my mom isn't obligated to follow it."
Correct.
But this maybe a grey area...
Many posters (I remember Blueeyedgirl's FIL especially) stated bold outright lies about how much family would do for him.
Family speaking up about exactly what they will & won't do helps.
* Yes I can pop in 2 x week.
* No I will not be living there.
Sometimes that is enough to delay a d/c. For the care team to ask more questions about what help at home is in place or will be arranged. Again, a person can tell bold lies about getting a live-in aide etc.
As we know, capacity is always assumed unless proved otherwise.
IF heavily suspected that comprehension/cognition is doubtful, then a relative or the care team can push for cognitive assessment.
I think what Alva has written is solid advice.
Unfortunately, she is going to fight placement to her dying breath. She's been horrible again this time to the staff (and they are good - this is the top facility in our metro area). She told me yesterday that she'd had a "fight" (I'm pretty sure she means verbally) with the physical therapist and the nurse manager had to be called. I'm guessing the staff would be just as happy to have her go home.
Often they will call a care meeting asking what sort of support of caregivers and family there is, and if there is "enough" they will allow this decision by a competent senior. However if there is none or very little care for someone almost bedridden they will likely challenge the competency to make this decision.
At this point I would try to ascertain FOR YOURSELF how much you are enabling this dire and bad decision making. Your mom is virtually bedbound, and really why would you NOT be given all that comes with being 91. They always tout the 90 year olds out running around having fun. Poppycock really.
I think that it is time for placement.
Or you will go on in this manner.
It really has to be your decision.
Your mother may be competent, but this is truly terrible decision making to return home without 24/7 care, imho.
So here is my 1st question: what is the point of doing all this therapy when she will go to bed & stay there the minute she arrives home? Because it's painful to walk with her rollater, she will go back to sitting on it & pushing with her feet during her rare times out of bed. Is this just to justify her presence in the facility?
My mother is making her own decisions - though I'm observing some evidence of cognitive decline, she's doing well for a 91+ yr old. She has the right to go home, and I understand why she wants to.
My 2nd question is: what duty of care does a facility have if it's very clear that she needs daily, really 24 hr assistance, but refuses it? They know she isn't safe with a very part-time aide. Do they have any responsibility, or since she's legally competent, no? My mom is pushing to be released in a few days, and I'm guessing she will be. BTW - the team can give a care plan recommendation, but my mom isn't obligated to follow it (been down this road a number of times).
Thank you all for your earlier replies. Your kindness and support help more than you may realize. For my sanity, and because I'm not making the decisions, I've decided to pull way back.
Mark has PKD, stage IV-V and this causes a lot of health problems (more than most of us realize) including problems with RBC, temperature, the heart, pretty much all major body systems. I am amazed they allowed an aid to discharge her since it is so unsafe for her with pretty much no mobility and she cannot accomplish ADL. It might be time to call APS and state that there is an at-risk elder if she refuses to see that home health care is really not an option for the level of care she needs. When someone cannot do ADL they need around-the-clock care for even the most basic of needs, even if they are mentally competent.
“ Stop helping “.
If Mom ends up home again , WHATEVER you are doing that is facilitating her to stay in her home , Stop . Stop it all , no shopping for her or bringing her meals etc , and call APS , tell them she is home alone a lot and needs a nursing home , she can’t change her depends on her own or get dressed.
If your mother ends up going home again , You could also try calling your mother’s local County Area of Aging . I did this for my mother. They came to my mother’s house and determined she could not live alone , they were willing to come back and physically remove my mother from her home and place her in a facility that I had chosen .
Stop getting your Mom in the car to go to the ER . Tell mom to call 911 if she has to go to the hospital . Stop propping her up by doing things for her. If she can’t call 911 then you do it . Next time absolutely refuse to take her home . Don’t pick her up in your car . If Mom is so independent , she could make all these arrangements herself.
Tell rehab she can’t go home , she needs long term care , that she is alone a lot and you can not help her at all .
I’m sorry she is so stubborn , but you have to tell her that you are not going to help her stay in this unsafe situation . Step back .
CHANGE HER MIND.
From I AM NOT.. yada yada to I am going to the BEST Nursing Home. The Nicest Senior Living Centre, the Glorious Golden Girls Lodge, Serenity Pinecones, whatever it is called, wherever it is.
Or, it becomes a case of 'Choose your Nursing Home or your family will.
Start the search. Tour 3. Have one in mind for when the next loop of ER-hospital-rehab-home-ER-hospital comes around. At some point her train will deviate from the loop & will take the branch line from Rehab to Respite.
Folk get used to going to Rehab. Then become OK with the word 'Respite'.
Respite becomes "for now.. ish, maybe a little longer".
I know you are not asking a question, but you wrote below that your husband is disabled and you are still working and orbiting around your mother is taking a toll. If you don't make your life and husband a priority, your "life plans" won't ever get to happen. Did your Mom orbit around her parents like you are doing for her? I bet not.
I know you love your mom and don't want to see her suffer, but in the meantime, your priority is you, your husband and your lives. Respectfully, it seems you need to have a boundary with your Mom. In May, my retired RN Mom turns 95 (I'm her PoA) and her sister will be 105 (I'm also her PoA). Both are currently in their homes and I'm providing and managing their care BUT I can only do it with strict boundaries and clear priorities. They don't get to call all the shots. My life and husband come first. The caregiving needs to happen on the caregiver's terms or it is an unrealistic, unsustainable and damaging arrangement. May you receive clarity, wisdom and peace in your heart as you figure it out.
The granddaughter is of course devastated by this after years and years and years of care, trying to keep her in her home which she was so adamant about, then coming to her own home. But she says then in one sentence that yes, she wished she would die.
It is sad that this is what it comes to.
Do we live longer? Yes we do. I do just wish they would issue us all an exit pill to use if we wished to, before we ruined the lives of not only our OWN children, now too old themselves to care for us, but our grandchildren as well. What a place to come to.
There's no mention in your profile that your mom has dementia, so you can't force her into a facility, but it is within your power to step back from doing the various things that give your mom the illusion that she's living independently.
Time for a serious talk:
"I love you mom, and I want you to be safe and healthy. The way you're living now is neither safe nor healthy, and that's your choice. I want to help you, but I will not longer help in ways that allow this dangerous situation to continue."
As I've learned from this forum, caregiving must happen on the caregiver's terms, not the other way around.
Clearly you had no-one who could or would care for you outside a NH (could it be about not being the ideal patient?) , but that is no excuse for coming up with non-existent magical options that have the sole effect of confusing and blaming people who really have no choice.
I thought you had improved, but no, we are back to the original line. Ha, Ha comes next?