Hello! My 82 year old mother, who has a host of health problems - most recently suffering a stroke in January 2022 - was in the hospital late April with painful bursitis and spinal degeneration. I suspect she had an unreported fall, but, she insists she did not (she is not always honest, unfortunately). Against her vehement protest, I got her transferred to a skilled nursing facility for rehabilitation, versus her desire to simply be discharged home, despite being wheelchair bound (and by "home", I mean she lives with me, has for the past 3 years).
The current situation, now a week in, is that she is receiving physical and occupational therapy. According to her, she will be "dancing up and down the stairs in no time"; I find this very hard to believe, given the combination of her still being wheelchair bound, on some really strong pain medications (Lidocaine patch on her hip, 600 mg Advil several times a day), and not exactly being someone who is open to physical activity (part of the reason I think she is in this predicament). I know Medicare runs out in a few more weeks; the "contingency" I seek is to find out what options I have if we face the very real possibility that she will not regain mobility sufficient to return home in a safe manner (she lives with me, but, I am NOT her caregiver, nor is my home conducive to support someone in a wheelchair).
I live in Southern California. The task of sorting this all out will fall squarely upon my shoulders. I am immensely grateful for any insight, guidance, or advise any of you might have to contribute to my situation! Thank you, in advance. Warm wishes to all who are here, dealing with these types of issues in some capacity or other ...
It may be time to have discharge planning meeting with doctor (if he/she will attend) social services, and PT. Get a realistic assessment.
I think you are looking now at permanent placement. You may need social services to discuss this with Mom.
Are Mom's assets good? Many ALF are lovely and very W/C friendly.
You are doing what you can but I suspect you are looking at Mom using W/C now or suffering quite excruciating pain and falls as well. I sure do wish you luck. You are going to have to be stone cold honest and know this is no time to beat about the bushes.
Her having serious spinal degeneration would not surprise me at all, as she has been sedentary most of her life. Even before the loss of mobility, she would deliberately walk as little as possible, despite my "if you don't use it, you lose it" imploring to her all these years. I don't know what exactly she expected would happen - which is also what I think is feeding into her "I will be dancing around in no time" proclamation, as though there is some miracle pill that will put her back on her feet soon, versus her having to do any work to rehabilitate herself in any way.
Given that the stroke was almost five months ago, plus the more recent falls, indicates not only that mom will need wheelchair accommodations, but she will also need to be assisted with all her adls. The place for this is skilled nursing, the highest level of care.
I would get Medi-cal in place for her now to take care of her needs where she is or in a different facility with a similar skill level.
Interesting, your comment about ADLs; she has received more occupational therapy in the skilled nursing facility than she has physical therapy, which has me speculating they are teaching her how to live in a wheelchair for a reason.
She has money in the bank (about $140,000 or so, from what I can tell), so, she is not in a dire economic strait. I know that would burn through relatively quickly, but ... it at least would not be an immediate factor/barrier to decision making.
The fact that she thinks she will be dancing on stairs soon tells me that her cognition, her ability to see the big picture of her health, is damaged in some way.
Have you expressed your concerns about her cognitive skills to the NH and asked for a consult with a geriatric psychiatrist?
I highly recommend reading "On Being Mortal" by Atul Gwande. Sometimes we need to find out what matters most to our elders and try to plan for that. At the same time, understand how much and what you are willing to do and don't be coerced or guilty into giving up your life.
To your other question - no, I don't have that level of POA per se. I do know that the "world" seems to look to me to sign off on things, though - so, it seems implied in some fashion, but not official - at least not yet.
I put in a call to connect with/talk to the discharge planner there at the skilled nursing facility; waiting to hear back from them. I'm definitely going to be vocal - both about my concerns as well as my boundaries in this situation.
Thank you so much for the book recommendation! I've added it to my "queue" ...
... also, thank you for the "guilty into giving up your life" comment. I have been in that precarious position, wanting to help, but also not being willing to sacrifice my existence. Some folks will adopt a "I don't want to be a burden to anyone" approach; my mom is pretty much the opposite. She feels fully entitled to upend my life entirely ... so, it remains up to me to protect that boundary as well.
It's a by-product of dementia sometimes.
This concept would also explain why she categorically refuses much of the guidance she is given, particularly about her own limitations.
Be sure and make it VERY clear that she isn't safe to come home without mobility, period. Tell this to her therapists, her social worker, the doctor, the director of nursing and anyone else that will listen. Make it VERY clear that NO MATTER what she tells them, she doesn't have a caregiver at home and you CAN NOT do it, period. This is what people tell the facility whether it is true or not, because they know it starts the home process. Stop it before it starts. BTDT!
Ask the facility to do a needs assessment. Then you will know what type of facility to look for. Make sure and ask if they accept Medicaid and get it in writing. You will have better options being able to self pay before transitioning to Medicaid. Look for a facility that she can age out in, this will have different levels of care available, clarify that ALL levels accept Medicaid.
I really like board and care homes for seniors that are not interested in the activities and amenities, you pay dearly for them, so not worth it if she won't participate. They are also a lot cheaper and usually allow hospice, this is another thing you want to clarify, as not all facilities allow residents to have hospice and you have to move them at the worse possible time.
Best of luck!
Edit: unfortunately, many of us are waiting for the crisis that forces change. You have to make it clear that she will be alone most of the time if they force her on you. DO NOT sign anything for her. She is mentally able to and many of the forms have small print that says you, as signatory, take financial responsibility.
I agree, always start with actual facts. Stroke, spinal # etc.
At the next team meetup with medicos, get the professional opinions. Ask what level of care is anticipated by discharge.
It can go something like this : a pick a path;
Pathway A: previous function obtained = home.
Pathway B: not quite previous function, but can manage all ADLs independently with gear: walking aide, shower chair etc = home.
Pathway C: a little assistance is required (for either physical or cognitive reasons). If *intermittent* assistance is enough/safe, could employ home care aides eg 3 x week bathing assist = home with care support services
Pathway D: assistance required all day or at call = fulltime aides, in shifts to make this work at home OR residential care home.
Keep your Common Sense hat firmly on.
By all means ask Mother what she wants. Ask her wishes. Include her. But she must choose from what is possible & also available.
Dancing on the stairs sounds adorable 😊 that may be her cheeky humour to cover up. Or Anosognosia.
Either way, she will be presented her choices, from what is *possible*. Or, if she is deemed unable to make an informed decision, you as her POA will be asked.
Listen to Mother's wishes.. include her values in your decision if you can. But make your decision with you hat on. Your Common Sense hat.
If a wheelchair bound person, needing all day support cannot live in your home. Then, they can't.
My wheelchair bound Parent could not even get home until a ramp was build. Only did get home as Spouse said yes to all the care & added hired care too.
My mother's wishes, as it seems, is to just come back to my house and let me do everything for her, while she sits in a chair, eats poorly, disregards doctor's and therapists' orders, and expect everything to just be fine.
Her decline has been on apace now for some time. The stroke was not a surprise when it happened, nor is the latest loss of mobility development. Even the doctor who treated her after her stroke told me it was just a matter of a small window of time before more catastrophe set in.
She is currently at Pathway D, and I think best case scenario she might recover herself temporarily to Pathway C. Anything above that seems entirely out of reach at this point.
I fear it is going to come down to a tense and anger-laden argument. But, that would be better than her coming home and falling and having a vastly life-altering injury on my "watch", if that makes sense.
What are your boundaries in this situation?
"She feels fully entitled to upend my life entirely "
You can bet your mother will tell the discharge planners that there is plenty of help for her at home (you!). So both she and the discharge planner are going to give you a hard time if you tell them you canNOT be her fulltime caregiver. Be ready for this.
What are your mother's finances?
I just visited with mom last night in the SNF. Despite being there 8 days, and still wheelchair bound, she explained how adamant she is to be discharged in less than a week. I have pushed back gently, but find myself keen to avoid an argument with her. I'd rather work with her practitioners first and get some answers I can depend upon.
My boundary is that I will not allow her to cast me in the role of her caregiver. She is going to do everything in her power to thwart that boundary, I am well aware. And to be fair, I haven't been as strong about this boundary in the past, so, sadly I've trained her a bit on how to manipulate me and control the situation. I need to change that, as the road ahead is going to be really difficult, and I have to prioritize my own well being as well as hers.
I am prepared for the staff to possibly give me a hard time; I had a warm-up to that when she was still in the hospital, and the nurses and staff were all eager to just send her home with me (and obviously she was, too). It wasn't until I tried to talk to her about it, and she started screaming at me from her hospital bed "are you just trying to get rid of me?!?", that the nurses I think started to recognize more about the full picture of the situation. Getting her into the SNL after that was honestly a lot easier than I originally feared.
My mother's finances, well ... she has Medicare, private insurance, but no long-term care coverage. She has a retirement with about $140,000 in it, a small pension, and Social Security. So ... she's not destitute, for certain. I am hoping that proves game-changing when the conversation starts to take real shape about where she needs to live.
Thank you, so much, for your thoughts and insight!!!
Your mother will have to pay for the aides. Will she? Or will she have a fit about the cost of fulltime caregivers? Will she refuse to do so? (Are you her POA?) Is she mentally competent and does she pay her own bills?
The rehab facility could promise you all sorts of help if you take her home. Don't fall for that. Once she's out of rehab, she is YOUR responsibility, and that is what they want.
While she is in rehab is your best chance to get her into a facility (I think that is probably the best choice because I think she's going to put obstacles in place to outsiders being her fulltime caregivers.)
When there is no one else there, YOU will become the fulltime caregiver. You already know where she wants you to end up (and that is as her caregiving slave).
Please keep us updated!
You need to make the staff aware that she will not be coming back to your house. Its not feasible. Both you and husband work and traveling is involved. Having round aides coming in Your home will not work either. Moms money would be better spent on an AL. About 90 days before her money runs out, apply for Medicaid.
Ask when looking for an AL if they except Medicaid. In my State if you pay privately for 2 yrs, you can apply for Medicaid. Be aware, ALs that do except Medicaid also have limits on how many residents can be on Medicaid. Maybe in 2 yrs Mom will be passed what an AL can do for her and she will need LTC.
Its no longer what Mom wants, its what she needs. Talk to the staff and see how long they feel she still has. What I would do is take her directly to the AL from the Rehab. Do not bring her back to your house. Same if LTC is suggested. Where I live Rehab and LTC is in the same building so easy transition from one to the other. I would also have the therapist, in your presence, tell her she needs more care than you can give her. Meaning, that she recommends an AL. Mom may listen to her better than you.
No, she will not be happy but this is how things are going to need to be. You are not willing to be a caregiver and your house is not suitable.
Talk to the SNF that your Mom is at. They have social workers who should help you place your Mom. They have lists and contacts. Start seeing if you can place your Mom in an AL. The options are much better if she isn't in a wheelchair. See if there is a place that has ambulatory and non-ambulatory care. She can start in the non-ambulatory care and improve to the point where she no longer needs a wheelchair. Maybe she will even find some new friends so that she can go dancing again.
Good luck!
Good Luck and keep us updated.
In my case, we had to restore my Mom's core muscle strength (abdominals) and balance. She had strong legs, just couldn't get up from the chair or balance on her own. She's never been able to do a sit up in her life. Once we got her core strong enough so that she could get out of a chair and stand straight up without holding onto anything, we had to work on balance which is a lot harder because some component of balance is mental, especially since one needs to shift their weight from one foot to another to walk. (Most of us just "throw" our weight from one side to another which isn't a good for us in the long run.) Some of the exercises were hard for even me to do.
However, she did it...and your Mother can too....
Go MOM!
My advice is to not give up.
If you have an experienced social worker it is so helpful. So many do not have the knowledge to help enough. They can work wonders to assist you in every way. Once again, only if they are experienced. I had my share of the same old answers and feelings of desperation.
Give into your Mom even though she is wrong or talks foolishly for your own mental health. Don't fight her even if you have to bite your lip. It is much easier to support and accept. She will hopefully be more understanding and if not then do what you have to.
If she is able to get to the wheelchair alone without assistance it will be a battle to keep her in a SNF/Rehab but do not give up.
She is fast approaching the end of the 21 day period, and it seems they've deemed her able-bodied enough to possibly discharge. Which means, either I find an AL solution in the next 4 days, or, she's on the street.
She spends most of her time in the wheelchair. She can walk a bit with the walker, and can get herself up into the chair and back out seemingly okay. But, I certainly don't think she can be alone, and definitely needs assistance with most things. Plus, the physical therapy she is getting there is so beneficial.
Any tips on how to "suit up" for this particular battle, to keep her there for at least some of the remaining 100 days? It would at least buy us a little time to look over AL options and find a good place ...
Ask WHY they are discharging her? Has she plateaued? Is she not cooperating with therapy? You can appeal discharge; look up Jimmo v. Sibelius.
Ask if she can remain as a self-pay patient while you find an AL.
HAve you started looking for an AL?
My mom was in Acute Rehab and they discharged her with very little notice; you really have to pivot quickly (like in a day or two) to get tours and admission set up.
I just don't understand how they can "boot" her, unless she is insisting she is fine and has somewhere to go (which is my concern, and would be unsurprising).
I have barely started looking into places. My brother is a teacher, and will be done with his semester next week - we had it in mind that once he had so much more free time, he would be leading that charge.
That's a great idea, about the self-pay option ... which I can't help but think they'd be fine with. The facility isn't full by any stretch ...