Infection, Hospital, Memory Care Decisions to Make

BassetHoundAnn

My 95-year-old mom ended up in the hospital this weekend suffering from a severe infection. Despite many tests (MRI, CT, urinalysis, blood, nasal and throat swap, covid, you name it) the doctors have been unable to determine what sort of infection it is. I'm told this is not unusual because the universe is full of viruses and bacteria. 

My mom is doing better. Her fever is gone. Today she was able to sit up, walk, eat her lunch.  But cognitively she has declined tremendously. She has Alzheimer's. She's on oxygen. Her respiration rate is high and her blood-oxygen level keeps dipping low. 

My question is where do we go from here? The hospital plans to keep her for a few more days. After that I don't think she will be capable of going back to her quasi-AL residence. I had planned to move her to a memory-care facility within the next month. In fact she has a medical assessment with the facility's nursing staff scheduled for this week, but I doubt she'll be able to go.  

Do you think I can convince the hospital to discharge her to a skilled nursing facility? 

She's going to be too much for me to handle at my house. Today it took both me and a CNA to get her to the bathroom, help her, get her changed and clean up. Maybe she will cognitively improve in the coming weeks--she did after her last hospitalization for a fall. But I have doubts about my being able to handle her by myself this time. 

Any advice? Help! 

Quilting brings calm

Regarding the MC assessment, they can probably come to the hospital to do it.  When my mom had her urosepsis and  was in the hospital, I told them I could not care for her at home. I said it quite clearly multiple times.  The social worker arranged for her to go to rehab. My parents were already on a waiting list for an assisted living facility. A spot became available.  The assisted living care coordinator went to the rehab facility to do the assessment for her and my step-dad.

You tell everyone you see at the hospital that  you can’t care for her at home in this condition and that she had this assessment scheduled. But  that you don’t know if the MC will accept her in  the condition she is in.  

Jo C.

Ann, I am so sorry; what a heartache and so much stress.

The answer is that if your mother is in the acute hospital for three 24 hour days, she should indeed qualify for Skilled Care Rehab with Medicare.  Let her doctors know this is what you wish for her, and also let her Discharge Planning/Case Manager person know so they can get this into the discharge plan and make arrangements.  It is important she get those next few days in the acute setting before transfer so she hopefully will have more improvement.

She has, it seems, until this spell of illness, had higher functioning in physical abilities and it seems also in her intelletual abilities.  She can qualify for Skilled Care for P.T. to strengthen and try to return her to as much prior functioning as is possible.  She will however, must be able to work with P.T.even if she starts off slow and low before improvement.

That her O2 levels are still low would affect how she functions and also affects her cognition.  So hope that improves - do they know why this is happening?  Has she been started on new meds which also may be affecting her usual capabilities?  Especially sleep meds, or tranquilizers, etc.  Would be good to know the medical assessment for why her levels are so low and fluctuating if she did not have a condition prior to this hospitalization.  Have they by the way, checked her recently for a new UTI?  Always worth checking especially if at any point she was catheterized.

By the way, most are not aware of this, but antibiotics can also cause changes in cognition and function in the elderly and compromised and it can be quite dramatic. This happened with my mother and hers was indeed dramatic. I too have had CNS changes with a couple of antibiotics that have had to go on my allergy list.  Weird feeling.

We must also remember that when our LO is ill and is placed in the hospital, sometimes they decline by developing hospital induced delirium - do use Google and look this up and see how to assist in modifying that as she moves forward.   Sometimes delirium is very subtle rather than outright agitated.  Lots of good reading regarding this and it happens more often than we realize.

So; a number of things to think about, but once in Skilled Care with the routine and all, she may have some improvement.

Your mother is blessed to have such a caring daughter who is also a good advocate.  Let us know how it goes and how she is doing, we will be thinking of you.  With warm thoughts being sent your way from one daughter to another,

J.

J.

Cynbar

Yes, you should pursue short term rehab for her, make it clear to the hospital's discharge panner that she would not be safe returning to her current residence. Her Medicare plus supplement will pay for that as long as she is making progress, up to 100 days. Just be aware that sometimes insurance can pull the plug without much notice, so have your next plan ready. Many facilities offer short term rehab as well as long term placement, this is a good choice if you think she might need to stay in that setting when her rehab time is up (less disruption.)

harshedbuzz

In your shoes I would reach out to the discharge planner or social worker and ask that they release her to a SNF/rehab after a qualifying hospitalization. Be ready to give them your top 3 choices. If there's a SNF affiliated with the MCF to which she's moving, I'd make that my top choice and alert the facility so they understand the situation. 

That said, if you feel there's a possibility that she won't rebound to a place where she'd be accepted into MC (often there's an expectation that residents will be ambulatory or self-feeding on admission), then I would pick the SNF that you like best. IME, sometimes with bigger facilities, the care offered in one unit might be stellar while other areas are just OK. There's one big facility near me that's terrific with in-house hospice but I hear nothing good about their rehab and MC.

mommyandme (m&m)

Once during a hospital stay for my mother, she was very low and out of it.  I was facing the possibility of not bringing her home.  I found they had been giving her an additional midday dose of a med she normally only took in the am and pm.  That was the culprit for her grogginess.  When it wore off I was confident in her coming home.

Not sure if this helps.  Sorry for your struggles. 

Jo C.

Not being able to function at home is not a qualification criteria for Skilled Care.   The inability to function to the level she did prior to this spell of illness and her need for PT rehab to recover her function to its prior level OR to maintain her present capabilities and build her strength as much as possible, is.

The patient must fit the criteria for such care, which your Loved One seems to do, and a doctor must order the Skilled Care.

If a person can cooperate with PT, OT or other skilled treatments, that will keep the patient in Skilled Care for as long as is medically necessary.  Medically necessary is the key phrase.  If a person is no longer needing or fitting the Skilled Criteria, or is unable to whatsoever cooperate with PT, or has reached a maximum benefit from the care, etc.; then a "Notice of Non-Coverage" must be given.  In this notice, a person is given two grace days before mandatory no longer being Medicare covered for Skilled Care.  (Not 48 full hours; but two calendar days.)

Medicare does indeed provide 100 Skilled Care Days (depending) for an enrollee; BUT this is NOT what happens routinely.   A person rarely, rarely ever "gets" 100 days in Skilled Care at one time/admission. The average amount of time ranges from about two to three weeks give or take depending on patient medically necessary needs and coverage. This varie according to patient needs and some needs will go longer.

If a person runs out of their 100 days of coverage because they have used up all of their days,  the facility is not required to send that Notice of Non-Coverage; so keep track of the number of days used.   If all days are used up, IF the patient still medically requires PT, OT, etc. as medically necesssary; those modalities may be covered, but the room and other costs would not be.

NOTE: A person can again become eligible for the full 100 day Medicare coverage IF the patient is out of an acute hospital or SNF care for 60 full days in a row. (New coverage of 100 days begins on the 61st day.) You will then be eligible for a new benefit period, including 100 new days of SNF care, after a new three day inpatient acute hospital qualifying period.  Be sure to ask if this being out of care also means being out of a Memory Care or NH setting just to be certain, especially if that is the patient's place of residence.

Please be aware, that if a person uses say, 28 days of Skilled Care and discharges, but ends up back in the acute hospital a week or so later, and once again transfers to Skilled Care; that time starts ticking at 29 days for Skilled Care rather than day one - reason is; the patient was not out of acute hospitals or Skilled Care for 60 full calendar days.  Watch this carefully keeping count of days.  (The day of admission counts as a day; the day of discharge does not count.)

If a person has Medicare Advantage, they do not have to have that three day qualifying period in an acute hospital if the Advantage Plan has accepted this.  Far less expensive for an Advantage Plan to have an enrollee in Skilled Care rather than in the acute hospital.

If a person has gone home after the three 24 hour day qualifying period in an acute hospital rather than going to Skilled Care in transfer, that patient can still be admitted to Skilled Care within 30 calendar days after acute hospital discharge as long as there is medical necessity and a doctor's order.  Be careful how one counts.

NOTE:  In these pandemic times exceptions can be made to those qualifying days if other criteria are met; the bold print is mine:

From Medicare Info Site: "During the COVID pandemic, some people may be able to get renewed SNF coverage without first having to start a new benefit period.  If you’re not able to be in your home during the COVID-19 pandemic or are otherwise affected by the pandemic, you can get SNF care without a qualifying hospital stay,"    You would want to check this out if needed to see if this still exists and if you LO fits the parameters.    From what you have written, it does seem that your mother may well fit Skilled Care criteria.  Let us know how things are going, hope it goes smoothly without a problem giving you time to make the long term arrangements and getting your mother more mobile with better strength.   J.

BassetHoundAnn

From the bottom of my heart I thank you all so very, very much for all that you've written! Quilting, Cynbar, harshedbuzz, mommyandme, and Jo C--especially Jo C for all the words of wisdom!  Thank you!

I've read your messages multiple times. I've printed them. Your advice has helped me navigate a very difficult week. 

I pushed the doctors and hospital social workers to transfer my mom to a skilled/rehab center. After she was in the hospital for several days, she didn't improve and was no longer able to walk on her own, it became clear to all that this is what she needs. She was set to be transferred to my first choice in a rehab center--which also offers a first-rate memory care, and happens to be in-network for her Medicare Advantage plan. I and the social worker did all the paperwork. I got mom packed up. I was doing a happy dance. Then hours before her transfer the rehab center announced it had a covid case and went into lockdown, refusing to admit any new patients. <sob>

We regrouped. The social worker is now trying to get her into my second choice for rehab. They said they might have a room for her later this week. This place is 20 miles from my house. I'm not much of a driver and this is not a highway route I'll be able to drive. I'll need to impose on friends or hire a driver in order to visit her. But that drawback aside, this place has a good reputation and sounds like it would be a good fit for her.

She was supposed to be assessed last week for a memory care facility. The MC nurse said she'd visit my mom at the rehab center and conduct the assessment there after she's had some time to get her strength and mobility back. She wasn't keen on doing the assessment at the hospital. Thank you Quilting for suggesting I press the MC nurse to go to her. 

So for the moment it feels like our lives are still in limbo. My mom is frantic to leave the hospital (who wouldn't be?). I am frantic to see her get settled somewhere and after that find her way into memory care. Today she told me that her long-deceased sister had called her and promised to pick her up and drive her back to her house, but she never showed up. Poor mom! None of the memory care facilities at which I have her on waiting lists have rooms available at the moment but I'm holding out hope that something will open up for her in the coming weeks after her rehab. 

By the way the social worker at the hospital claims that my mom's Medicare Advantage plan with UnitedHealthCare will pay for only 20 days of skilled rehab. I still need to contact UnitedHealth and find out the details of their coverage. 

Again, thank you everyone! Your help and wisdom has been a godsend! 

quartlow2

My heart goes out to you! I've been in your shoes recently!

We had a bad experience with SNF so take this with that grain of salt. If I had to do it over, I'd ask for hospice to assess in the hospital so she could go straight into MC. If you've been using a Home Health agency that you like, and that company also provides Hospice, stick with them. The continuity is priceless. The MC facility may try to talk you into using Hospice companies that they already work with. But the choice is yours. Go with who you are comfortable with and trust.

IF SNF is your only choice, spend as much time with your LO as you (or other family) possibly can. Nobody knows how to communicate with your LO better than you do. And no one understands your LO's needs better than you do. And the staff doesn't have time to learn as much as your LO needs them to for the short-term stay. If something doesn't feel right, question it. Don't expect the staff to be the experts with how your LO is acting. YOU are that expert; even when your LO is displaying new behaviors. The staff doesn't know that they are new behaviors unless you tell them. It could be due to a new medication or an infection or stroke. ASK; no matter how annoyed they look at you. I hope you have a better experience than we did if SNF is your only choice.

dayn2nite2

A Medicare Advantage plan is fine for a relatively healthy senior with maybe 1 or 2 chronic conditions and it certainly helps financially.

But as dementia progresses and you're looking at placement, that plan isn't going to work, not for rehab, not for pharmacy during that stay, none of it.

When my mother's disease was progressing, I took her out of the managed care plan and put her on conventional Medicare in case she had an injury/illness and rehab was needed afterward.

It's too late for you to do that but just adding in case someone has their LO on one of these plans and not realizing that it works great for regular outpatient care, but not great when you may need a rehab stay.

My mother actually stayed in a SNF for her placement of 3-1/2 years.  It was an excellent place, probably 70% of the people had some level of dementia, and it was full of activities and great staff.  They took care of her until the day she died.

Quilting brings calm

Day2…. My retiree insurance will switch to Medicare Advantage when I am 66.  Birthday too late in the year for it to happen at 65.   I’m giving serious thought to forgoing it and going with a Medicare supplement plan  D and a plan  G as each of us turn 65. My retiree plan becomes secondary then anyway.   We’d give up a generous discount for me ( a not so generous one for my spouse as a dependent)  I think it would be  less headaches in the end.  My Mom has  a plan D and a F ( closed to new seniors) and the only thing she’s had to pay is co pays on her prescription.  No deductibles for her hospital stay, two ER visits, one ambulance transport, and   a month long rehab stay was fully covered.  

Her plan F has gone up over a $100 a month over the course of two years, so that is concerning. I think it might be related to her age ( 83).  Maybe Aetna is not  the one to pick. 

jfkoc

The staff in the hospital, rehab are on overload and have no training to care for PWD. If at all possible have someone with her 24/7.

Any change especially one like the one you mother is going through is going to show up as a decline. She may well improve once she is back.

loveskitties

Dear QBC,

While the supplemental plans can be pricey, it is at least a fee that you can plan for monthly.

I agree that the plan F is great and it is too bad they are preventing new enrollees.

You can shop around for best price.  I went with AARP UnitedHealthCare.  While the premiums do go up annually, it is better than the hundreds of thousands of dollars a hospital stay can cost.

I also like the fact that as long as Medicare covers the service, the supplemental plan will also.  There is no back and forth trying to get things covered.

Best luck in finding the right plan for you and hubby.

BassetHoundAnn

I was under the impression that once someone selects a Medicare Advantage plan they can never go back to traditional Medicare. I went to a lecture about signing up for Medicare prior to the pandemic and that was my takeaway. Did I hear or understand wrong? 

BassetHoundAnn

quartlow2 wrote:

My heart goes out to you! I've been in your shoes recently!

We had a bad experience with SNF so take this with that grain of salt. If I had to do it over, I'd ask for hospice to assess in the hospital so she could go straight into MC. If you've been using a Home Health agency that you like, and that company also provides Hospice, stick with them. The continuity is priceless. The MC facility may try to talk you into using Hospice companies that they already work with. But the choice is yours. Go with who you are comfortable with and trust.

IF SNF is your only choice, spend as much time with your LO as you (or other family) possibly can. Nobody knows how to communicate with your LO better than you do. And no one understands your LO's needs better than you do. And the staff doesn't have time to learn as much as your LO needs them to for the short-term stay. If something doesn't feel right, question it. Don't expect the staff to be the experts with how your LO is acting. YOU are that expert; even when your LO is displaying new behaviors. The staff doesn't know that they are new behaviors unless you tell them. It could be due to a new medication or an infection or stroke. ASK; no matter how annoyed they look at you. I hope you have a better experience than we did if SNF is your only choice.

I'm sorry to hear about your bad experience with SNF, Quartlow2, but your story does give me something to think about. I'm now having second-thoughts about whether rehab is the best thing for my mom. I would love for her to go directly into memory care, but she's on waiting lists at all the good facilities in our community. Top of the list I'm told, but no openings at present. It's very frustrating. 

Today when I visited her she was able to go to the bathroom by herself, but she needed someone to hold her hand when she walked. An improvement over the past few days. She's still at the hospital waiting for an opening in a rehab facility. 

Thank you for sharing your experiences and your thoughts!

BassetHoundAnn

jfkoc wrote:

The staff in the hospital, rehab are on overload and have no training to care for PWD. If at all possible have someone with her 24/7.

Any change especially one like the one you mother is going through is going to show up as a decline. She may well improve once she is back.

For the first few days my mom was in the hospital nursing assigned an aid to sit with her for 24 hours a day. Which was wonderful I thought. It was because my mom was pulling out her IVs and pulling off the monitors. 

She has improved since then and can now be left by herself without fear of causing havoc. She does seem to be improving in general as she waits in the hospital to be transferred to rehab. I am told she can now use the bathroom by herself, change her clothes and can walk again so long as someone holds her hand. I am now wondering whether she should be sent to a rehab facility after all, although I worry that her walking is still too tottery for her to be returned to her AL apartment while we wait for an opening in memory care. 

BassetHoundAnn

whelmed wrote:

Keep in mind that unless they specifically mention being equipped for memory care in skilled nursing that skilled nursing may not be equipped for memory care!

My mom went to skilled nursing from her first hospital visit to do some rehabbing and when it became evident she couldn’t return to her independent living apartment, I started to look for a memory care board and care after caregiving companies couldn’t promise consistent twenty-four hour caregivers. 

Because of my mom’s dementia manifestations, I had to hire caregivers to sit with her during the day because the skilled nursing staff could only give her so much attention before having to move onto the next person, and this was supposedly the best skilled nursing facility in her area.

Sadly, she ended up falling in skilled nursing and going back to the hospital, and then we finally found a board and care.   

You might also want to place her in the one that is closest to you so you can spend as much time with her as possible.

Both of the skilled nursing/rehab facilities I've requested for my mom are attached to memory care units, so I hold out hope that they can handle someone like my mom. She isn't a lot of trouble in general, but she wants constant attention and no activity holds her focus. 

My great fear is that I'll need to hire caregivers to sit with her during the day wherever she goes, whether it's to rehab or memory care. 

I've been trying to get her placed in a rehab facility near our house but man it's tough. They're all out in the distant sticks. I've vowed I will get her into a memory care unit that's no more than a 15-minute drive away.

I'm so sorry your mom fell while in skilled nursing! That must have been terrible. My mom has severe vertigo problems and I always ask about sensors, etc. for fall risks when I tour memory care facilities but the answers rarely often much reassurance. The sensors and protocols used in hospitals and hospice for fall risk seem to be superior to those used in memory care units. 

harshedbuzz

Quilting brings calm wrote:

Day2…. My retiree insurance will switch to Medicare Advantage when I am 66.  Birthday too late in the year for it to happen at 65.   I’m giving serious thought to forgoing it and going with a Medicare supplement plan  D and a plan  G as each of us turn 65. My retiree plan becomes secondary then anyway.   We’d give up a generous discount for me ( a not so generous one for my spouse as a dependent)  I think it would be  less headaches in the end.  My Mom has  a plan D and a F ( closed to new seniors) and the only thing she’s had to pay is co pays on her prescription.  No deductibles for her hospital stay, two ER visits, one ambulance transport, and   a month long rehab stay was fully covered.  

Her plan F has gone up over a $100 a month over the course of two years, so that is concerning. I think it might be related to her age ( 83).  Maybe Aetna is not  the one to pick. 

My husband's been offered a MAP yearly, but we decline it. My mother is a retired teacher and enjoyed an amazing plan for years. They switched the entire state teacher pension group to an Aetna MAP which scared us both; the state assured their retirees there would be no noticeable difference in coverage. While it doesn't cover any transportation, vision or dental, it so far has covered care exactly as her previous Medicare policies did. 

To say my mom is medically complex is an understatement- she's been treated by 13 different doctors in the last year. The woman has 2 ophthalmologists- one for each eye. I can't speak to the MAP for post-hospitalization rehab, but it's been amazing for the 2 surgeries and bout of pneumonia she's had in the last 20 months on it. The one surgery was a TAVR procedure with 30 days of MCOT follow-up for which she paid just about nothing. It also picks up the cost of 2 specific prescriptions that aren't on most formularies. 

In your shoes, I would ask for the details of the plan before making a decision. I suspect it might be like any self-insured situation where a group determines the coverage they will offer and put it out to bid for administration. 

Cynbar

BassetHoundAnn wrote:

I was under the impression that once someone selects a Medicare Advantage plan they can never go back to traditional Medicare. I went to a lecture about signing up for Medicare prior to the pandemic and that was my takeaway. Did I hear or understand wrong? 

There is an Open Enrollment period every fall when Medicare recipients can switch plans. I believe it usually ends the 1st week in December, not sure when it starts, and the change takes effect on January 1. Watch your TV for it, the ads are everywhere during that time frame. A person can drop a supplement or MAP anytime and revert to just Medicare, but that wouldn't be a good idea because Medicare never pays more than 80% and the bills could add up quickly before you could sign up for another plan during Open Enrollment.

dayn2nite2

BassetHoundAnn wrote:

I was under the impression that once someone selects a Medicare Advantage plan they can never go back to traditional Medicare. I went to a lecture about signing up for Medicare prior to the pandemic and that was my takeaway. Did I hear or understand wrong? 

I was always working with future issues of this disease in mind, so when she was mid-stage I put her back on conventional Medicare with supplements during the next open enrollment, which at that time was like in November?  December?

BassetHoundAnn

An update: My mom is back in the hospital. Thanks to pressure from her Medicare Advantage insurer she was discharged from the skilled nursing/rehab facility after a week. She had improved there. She was walking, dressing, using the bathroom without assistance and seemed to be back to her baseline. After a week at home I found her on the floor unable to walk, unable to sit up, unable to stand. So it was back to the ER. Another slew of tests but nothing was found to be wrong with her except for increasing dementia. No signs or evidence of infection. 

The hospital plans to hold on to her until she can be discharged directly to the memory care. Hopefully that will happen this week. The facility is one of our first choices and they have a room available for her. The memory care wants to do another assessment of her--they want to do this one virtually, and we're working with the hospital social worker to make that happen. 

Cynbar

This is the problem with Medicare Advantage plans --- they strictly control how much care their patients will get, how long they can stay in rehab, what tests and procedures are approved, and so on. One week is a VERY short time in rehab. Some people never have a dispute with their MAP, but others have to do without care they needed. The biggest advantage of a MAP is the price, which is cheaper than going with Medicare plus a Medigap supplemental policy. But the latter has no referrals or prior approvals, and gives its members more assurance they will get care as recommended by their physicians.

dayn2nite2

I also might have a hospice evaluation and opt for a more comfort-care approach instead of these repeated hospitalizations.  Keeping someone's body alive by repeated hospitalization for infection, etc. is only causing more and more decline.  Dementia is terminal anyway, and frankly, I was glad for my mother that she had a heart attack in stage 7 and didn't have to live to the bitter end.

It is possible to opt to not treat an infection and keep the patient comfortable and pain-free until death.

Also, get her out of that advantage plan at the next open enrollment.

BassetHoundAnn

Thank you everyone for the great advice! I am moving my mom to memory care today. Wish us luck. It's been a long road getting here. We were scheduled to move her to a memory care facility last week, but the day before the move the facility suddenly decided my mom's care needs were too advanced for their staff and they didn't want her. Grrr. Had to regroup, quickly find a new place. But she's moving to a place that's close to my house and not-too-bad. Not among my first choices in memory care, but o.k. I spent yesterday moving her furniture and getting her room ready. Wish us luck!

harshedbuzz

Good luck today.

I hope it goes more smoothly than you are expecting. Dad's didn't get into mom's first choice  and my first choice had a 6 month waitlist, but our second choice turned out to be everything we'd hoped for. I hope it works out that way for you.

HB

Jo C.

Dear Ann, I am sending warmest thoughts and best wishes that all goes well today and that this setting is a big positive that has a very good outcome.

J.

BassetHoundAnn

Thank you Harshedbuzz, Jo and all the rest for the good wishes! I think moving my mom to memory care went pretty well. She's been occasionally confused, some days mad as heck, she wants to "go home," several times I got calls in the first few days that she had pushed through the security doors and was found outside. Aids despaired that she can move awful fast for a 95-year-old lady that was wheeled in and she has at times outrun them. 

But every time I've visited--and I've been there every day because I think my presence helps her adjust--I've marveled at how well-groomed and nicely dressed she is. She's had baths, she's in fresh clothing, she's in her Depends, and even her hair is styled. And her room and bathroom is tidy and fresh-smelling. All these things we struggled with. Sometimes mightily as she didn't want to change out of clothing she had been wearing for days, she didn't want me to bath her, she didn't want to wear Depends, and she didn't want bathroom help. 

I am so very relieved that she is finally in memory care and is finally getting the help that she--that we both need. I thought I would feel guilt at moving her to a facility like this, but I don't feel guilt at all. Instead I feel tremendous relief that she's getting help, that I have allies in this battle, and maybe sometime soon I can rest up from all the exhaustion and worry, and salvage some of the pieces of my life. Hopefully things will continue to go well and mom will continue to adjust. 

harshedbuzz

BHA-

That's a pretty good report for early days. I'm so glad it's mostly going well.

Isn't it funny how sometimes professionals can get our LOs cared for in way we just could not?

HB