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BubbaSue Asked August 2018

Is it time to consider adding hospice or palliative care to my mom's care in the nursing home? NH is wanting to relocate her.

My mom has been in long term care (since 8/2017) from a fall with a TBI. She has since been diagnosed with vascular dementia. She lost 48 pounds in first 8 months at original NH. I moved her and she is happier and weight loss has stabilized. She has begun falling down (13 falls in last 3 weeks) resulting in 3 hospitalizations. Nothing broken, but brusing, pain and more bumps to the head. She has been using a walker. Now the nursing home is trying to push me to move her to higher level of care. She is Medicare/Medicaid. There is no money for a memory type of care. I am POA and have been against any home change. Has anyone added Hospice or palliative care to allow a LO to remain where they currently live? As I have read, at this point she has most of the indicators that may point in this direction...frequent UTI's, VD, significant weight loss, can't dress or bathe herself and needs help toiletting. She still has most of her words, but now can't recall my daughter's name in the last 2 weeks. Her other underlying conditions are BP/run high, pace maker for Afib/low heart rate, life long depression.

PrairieLake Aug 2018
Some skilled nursing homes do not have memory care units or locked ones in addition-that accept Medicaid. When my Dad was being discharged to a skilled nursing facility (SNF) the discharge planner at the hospital gave us a list of 10 SNF that met those requirements. We selected three. Then the hospital checked to see if they had a bed open.
Now we won’t have to move him if he gets worse as it is a step-up care that accepts Medicaid. Unless he becomes aggressive and is a danger to others.

I worked for 20+ years in SNF’s and did do speech language therapy for people that could not participate-whether right before Hospice or in the first few days of hospice.
It was to set up an environment for the best communication for staff and family with the patient, and for comfort eating. It is always short term-less than a week, but very beneficial to the patient and family.

vicky64 Aug 2018
Good Morning,
My understanding of how all this works is in MT.  Mom fell, broke her hip, had surgery. She was to be in a wheelchair.  She forgot and got up only to fall and break the other hip.  So, the Dr had to not only order the wheelchair, but also order a strap to go across her.  Then is had to be a buckled best that she could undo.  Because it was there, though, she cold not just get up and fall without someone noticing that she was struggling to get it undone.  At the end, she thought it was the belt to hold up her pants.  (She was wearing a dress)..  Yes, the Dr. has to order the restraining strap..  God bless you on this journey!

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cetude Aug 2018
Palliative care will try to treat the patient with their nurses/doctors, but if they do not respond they will be turned over to a hospital. Although full-code is retained with palliative care I would never recommend it if hospitalized because if they crash they will shove a tube down her throat, do CPR (perhaps break a rib) and shock her..however, some nurses and doctors believe DNR means do not treat--which is not the case. A DNR MUST BE TREATED--and it is up the the family to ensure this is being done...just no heroic measures. Unless it is understood comfort care only, which goes into the realm of hospice. Let them go peacefully. If she is under Medicaid, it will pay for memory care. Adding palliative vs hospice needs to be a family decision and hopefully you know your mom's wishes prior to becoming chronically confused. Do not let a nursing home force you into anything you do not want. I have my end-stage Alzehimer's disease mom under palliative care but she lives at home with me. I use them minimally but they will supply me with undergarments, gloves, and a weekly visiting nurse to check her out. If she has a problem I don't have to call 911 but the palliative care number and they take over and try to treat her at home. if that does not work they will hospitalize her. PERSONALLY if she is in a nursing home I would stay away from hospice unless you intend to let your mom go peacefully because the will keep her drugged and she will go faster. My mom under palliative care with no nursing home she takes no narcotics and no psychotropic drugs. As my mom deterioriates with age and Alzheimer's I will then depend on palliative care more and more. I am anticipating the worse since I know she won't get better.

BarbBrooklyn Aug 2018
My mom's nursing home had a locked Memory Care section; it was still a SNF, just the residents didn't have the ability to come and go as they pleased. Does you mom's nursing home have such a section?

As far as I know, it was still covered by Medicaid.
BubbaSue Aug 2018
No memory care unit here. At that point she was doing well and not falling. Quite a predicament now
Grandma1954 Aug 2018
The qualification for Hospice is
Life limiting condition, with no chance for recovery and no continued course of treatment.
(personal opinion she probably would have been Hospice eligible in August of 2017)
Contact, or have Nursing home contact Hospice. (You can interview them as well, you can choose the Hospice you want) have her evaluated.
But
Hospice will not have someone there 24/7, Hospice will not prevent another fall if that is the concern. Your Mom will not be transported to the hospital when she falls again. Hospice becomes the 911, they will be contacted. If she requires hospitalization or is taken to the hospital she will go off Hospice. (Hospice can not bill while she is in the hospital and the Hospital can not bill if she is on Hospice) She can go back on Hospice once released from the hospital, if she goes into rehab she remains off Hospice.(again my personal opinion here but... to send someone to rehab with TBI/dementia is pointless for the most part. You have to be able to understand and participate in rehab. )
I think the call to hospice is a good one but the fact remains that if the facility where she is does not think they can keep her safe and that she needs more observation, more staff they can request that she be moved to a Memory Care facility. Unless you can provide a "sitter"
BubbaSue Aug 2018
You have quoted everything they said when this all came to a head thank you for confirming what I think is going to happen.
Susanonlyone Aug 2018
In my area (western NY) almost all residents in SNF’s are in wheelchairs . These residents may have been in AL facilities but can no longer use walkers or wheelchairs (with little assistance) and the next level of care is a SNF also referred to as a nursing home. There is no higher level of care. Is your mother in an AL facility? If she is in a SNF aren’t the other residents using wheelchairs?
BubbaSue Aug 2018
They want to move her from NH to memory care. With a medicaid payee, tough to find. But still trying to work on medications. Holding pattern for now. Thank you for your help.
igloo572 Aug 2018
Higher level of care? NH is already skilled nursing care. If their pressing a move to MC, well to me it’s not a higher level of care but a different type of care. It’s not a lateral move as that would be to another NH. MC usually is locked/controlled access wards with cameras/door alarms 24/7; MC isn’t going to stop mom from falling as it’s not 24/7 1:1 oversight but should have a somewhat higher ratio of staff to resident so in theory more eyes to watch her.

But personally I think their wanting her moved out as to shift her increasing care requirements & looming liability to another place. Plus you visit like every day, just about, don’t you? If it’s really “at least 5X a week”, I’d bet you visit sometimes 2x a day...... It may be that your pretty constant presence is problematic for staff and their ability to keep to a schedule as they have to work around you being there.

Her being gone = your gone too.

NH is 2.5 mi from your home, I get it, it’s super nearby & convenient for you so you visit & often. But I’d bet NH is beyond over you. If this could be a factor in them pressing on her moving to a MC, in addition to her fall-risk, they can find reasons to get her out...... if your getting written concerns or a 30 day notice on her care & this NH capabilities, she’s going to get moved out. Right now they want you to deal with doing this but if you don’t, then what can happen is when she has another fall, they will send her to the hospital and then refuse to take her back. Hospital discharge planner will have to find a spot for her or you take her into your home.

I’d suggest you request via the DONs office to have a care plan meeting ASAP to see what options are & if hospice added onto her care plan, can keep her at this NH, then please allow for a hospice evaluation to be done. NH MD/medical director will sign off for the evaluation to happen and then hospice group will send out team or maybe just hospice RN to do this. Hospice is a mediCARE benefit, so it’s technically self directed so your mom or you as her DPOA can select the vendor. Usually the NH as a few regular hospice groups coming into the NH already. It could be that the NH needs you to allow for hospice & perhaps pick a hospice in order for your mom.

If the hospice group doesn’t mesh well for whatever reasons, you as dpoa can change to another group. I did this with mom’s hospice, for me it was more about a matter of communication.... 2nd group could Skype and would call me from mom bedside in addition to email updates. I’ve got to tell you hospice was hand down absolutely a good decision. Hospice coming in 2-3 days a week added needed extra hands for my mom’s care plus brought in equipment (pneumatic bed, Geri bathing and day chairs, extra nutritionals, etc.) My Mom was on hospice 18 months before she died.
BubbaSue Aug 2018
I am in no way underfoot or interfering. But I choose to do her laundry and pick it up, I try to time visits with a meal which gives CNA's time to attend to others. Her falls are the issue and I know they don't want the liability of caring for her.
ConnieMH71 Aug 2018
Yes! Hospice stepped in to help my mom at the Assisted Care facility she was in. And they are wonderful!! I think you may need to tell her Dr. you would like help from Hospice. Hospice will come evaluate her. They understand the dying process and how to make her comfortable and less restless.
If your mom has no appetite you can convince her to eat, but sadly in many cases you might be causing stomach upset if her system is shutting down and only prolong her death and the ability to die with some degree of dignity.
God bless you for your loving care.

BubbaSue Aug 2018
Here is an update. NH is saying because they can't trust her to not fall, she needs memory care. They have stated fall pads not applicable since she falls randomly. Also, NH doesn't use alarm pads in bed or wheel chair. Texas law says she has the right to fall, but they have stated will not let her injure herself further. She has yet to be wheelchair evaluated by PT. She is 2.5 miles from my home and I see her atleast 5X weekly. NH stating memory care only option for her, due to need for increased oversight, not a lateral NH move. But where? She could be placed any where. I'm distraught.
BeckyT Aug 2018
As her POA, start researching Memory Care units. That lets you pick the place she moves to.
Harpcat Aug 2018
To qualify for hospice under Medicare there are strict guidelines and from what you say it doesn’t sound like she would qualify. But yes get a wheelchair for the poor woman and see if that doesn’t help. Eventually she will fall and break a hip with the rate she is falling. This is very similar to my dad who's last fall had a horrific femur break around his hip replacement. He is now wheelchair bound in LTC.
I don’t know what higher level of care they mean...what do they suggest when you ask?

JoAnn29 Aug 2018
I am surprised they haven't put her in a wheelchair. Mom was in one from day one with an alarm. If they ordered it, I didn't sign off. I agree a NH is as high as there is, in my area anyway. They take care of the worst. There is no place higher.

Daughterof1930 Aug 2018
I don’t get what higher level of care they want if she’s in a nursing home? Nursing home is high level care. Certainly sounds like she doesn’t need to be walking anymore, that’s a huge number of falls. Palliative care is simply care means “not a cure” and is designed to keep someone comfortable. Hospice is end of life care, but can go on for an indeterminate amount of time. My mother received complete care in a nursing home, there was no higher care than she required. It wasn’t a matter of money, she got the same care through being private pay onto Medicaid. We both added and took away hospice during the time she was in nursing home.

Isthisrealyreal Aug 2018
Is it possible for the doctor to order a wheelchair?

I am very confused, she is in a NH and from my understanding all of the things you listed are what they are there to help with. Is that not the case?

I would push the wheelchair, she has been blessed that her falls have not caused any serious damage but it is a matter of odds at this point. How sad if she was seriously injured because the NH wouldn't put her in a wheelchair.

Sunnygirl1 Aug 2018
I inquired about Hospice for my LO, but, her doctor didn't think she was ready yet. She is already on Palliative care, which means that we are trying to keep her comfortable.

Have you talked to her doctor about your concerns? I'd try to make sure they understand what Palliative Care is. It's my understanding that there are no further tests conducted on the person, some medications are discontinued, and that only comfort care is used. But, the falls that you described, could still require that she go to the hospital.

You could address your mom's situation with her doctor, since she's had so many hospitalizations and lost so much weight, to see if Hospice is right for her. I don't know much about that.

But, if the place where she is says that she needs a higher level of care, I'd explore how that can be done. If she can't afford it, she may be entitled to assistance. Sometimes, people who are disabled or have dementia are entitled to special benefits due to the nature of their dependence on care.

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