Advice - Placement issues for LO with EO Alzheimer's & stroke

taylorhicks19

Hello,

My father was diagnosed with EO Alzheimer's in January at the age of 54. Soon after getting his diagnosis, he suffered a major stroke that left deficits on his left side and he is no longer able to stand on his own. We noticed the stroke also progressed his disease immensely. He was placed in a nursing facility after recovering from the stroke, but was put back into the hospital on a 1013 because he was having extreme agitation towards the staff. He's been at a hospital in Atlanta, GA since April. 

We've gotten an elder care lawyer to help get him placed, and he is medicare and social security pending. The hospital's care coordinator and our lawyer have said they've sent his application to 150 facilities in GA, but have gotten denied everywhere. He has been off of his 1013 for several months and they first told us he was being denied because of his agitation. That has since been controlled with medication, but he doesn't understand that he can't walk so he needs a sitter in the room to keep him safe from falling off the bed. Now we are being told he isn't getting accepted because of the sitter. They still do PT 3 times a week and are able to help him stand and get into a wheel chair. He is also hard of hearing and normally wears hearing aids, but the nursing home and hospital have lost several in the course of his stay. They are now using a hearing amplifier that has also helped with his mood and agitation levels.

We are hoping to get him into a skilled nursing facility, but seem to hit a brick wall at every turn. Has anyone else had experience with this kind of situation before? We are looking for someone to give us more answers than our lawyer and the care coordinator have been able to do. They won't provide us a list with facilities they've reached out to and caution our involvement in calling ourselves. We're seeking another opinion from a different lawyer as well. Is there anything else we can do?

 Thank you in advance for your guidance!

Taylor

towhee

Welcome to the forum, sorry you have to be here. There have been several people here who have loved ones with early onset who have had difficulty placing them. You will get more responses tomorrow. You are trying several avenues and the hospital care coordinator should be motivated to clear your fathers bed. You might try reaching out to the long term care ombudsman, they are usually familiar with facilities in their area and can sometimes provide advice. They are usually associated with the Area Agency on Aging. Try aging.georgia.gov/locations  

I think I would want to see what information the hospital is providing to the facilities, and to dig a little deeper into why facilities were turning your father down. In my admittedly limited experience, facilities don't always tell you their true reason. 

Nursing homes deal with fall risks all the time. Usually they have beds that lower very close to the floor, and someone who can't stand up without help usually cannot get up from them. Does not mean residents do not sometimes end up on the floor, but it is a 12 inch distance, not 20. Nursing homes usually have no objection to sitters if they do not have to pay for them. You might be running into a problem of nursing homes being short staffed right now. 

Hope someone comes along with better answers-

MN Chickadee

If he is truly stable on medications I would think you could find a place. Falls are common in memory and long term care. Most memory care and SNF have strategies for the folks who are fall risks to reduce them. I haven't heard of having a lawyer do the actual leg work to place someone, and I find it odd your own attorney won't provide you with what places he or she has contacted. I  kind of wonder if the lawyer is just racking up a bill? They work for you, I would demand a list of places they have tried. I see no reason you can't do some calling around, most of us do. You might try contacting the Alzheimers Association in Atlanta to see if they have any guidance. 

If he is in a regular hospital, you might consider transferring him to a geriatric psych unit for a little while. There the staff is highly trained in dementia, and may get him even more stable on meds plus have more skill and connections to get him placed  in a home after. It's pretty much what they do, get people stable and help them transition to long term care. The social worker there may have more success. And they are better trained to deal with day to day dementia issues.

Good luck and let us know how things go. 

Cynbar

Have you considered hiring a geriatric care manager to help you navigate this? They are private pay, professionally trained either nurses or social workers who are knowledgeable re resources and skilled at assessments. They generally have a lot of knowledge about the inside workings of the system. You could either ask your dad's PCP office or the hospital social worker for recommendations , or use trusty Google.

harshedbuzz

taylorhicks-

I am sorry you are up against this. Yours is a very difficult situation for a number of reasons.

1. Many facilities operate under a business model of having a resident enter under self-pay at a higher rate for 2-3 years before converting the resident to a Medicaid bed at a lower reimbursement level. 

When a friend was in this situation with her husband, the only place that would consider him was the county department of health SNF. It's a very well run facility- not fancy but offering excellent care.

2. He's a younger man. Many facilities are reluctant to offer a bed to a younger man because of their reputation- as a group- for acting out sexually with staff or other residents. Agitation also likely plays into this. Anecdotally, I found the state home for veterans the most willing to take on such a residents assuming the were honorably discharged which had a longer waiting list than any facility I toured. 

3. The sitter situation. IME with an aunt who was on Medicaid/social security and required a sitter after breaking her hip, was that family was expected to pay for/provide the sitter. My aunt's family mostly covered the required shifts themselves splitting it between a her disabled daughter, her son's widow and her 85 year old sister. Auntie passed within months, so hospice was engaged but it wasn't anywhere near the help they needed. 

HB

Jo C.

A warm welcome to you, Taylor.  I am sorry for what is happening. You have received some good input from other Members here which may be helpful.  When you mention getting your father into a, "Skilled Care" setting, I am wondering in what context the word "Skilled" may be.

In the healthcare world; a "Skilled Care" setting is one in which one receives rehab care at a higher than custodial level with skilled level care being provided by licensed providers for the purpose of P.T. rehab, or special wound care and other care that requires a higher level of licensed care done for a certain number of hours per day and can only be done by the special providers.  One must fit criteria for Skilled Care and care must be ordered by a physician.

A "Custodial Care" setting would be one that is for living as an inpatient that does not require the higher level of skilled care hours; most of it is daily care provided by aides and overseen by licensed nursing who also dispense medications.

The issue with Skilled Care is that your father must be able to tolerate the PT AND be able to follow instructions and have a certain degree of ability to recall given instructions while doing them.  With the hearing loss and dementia as well as the falls, it may be that he does not fulfill the criteria for admission to Skilled Care based on such clinical deficiencies.

If a person is looking for Custodial Care instead, then that does not require being able to follow instructions or have a certain degree of being able to hear, etc. Custodial Care is simply placement for care on a day to day living basis.  If you can clarify the setting being looked for, that would be helpful.

As an RN who was Administrator of Patient Care Management, I have never experienced a facility turning down a patient because a "sitter" was needed IF the family was going to be paying for the sitter as facilities in Skilled Care or Custodial Care do not pay for sitters.  In fact, my own step-father was in Skilled Care Rehab twice; he had dementia and had to have a sitter with him for which we were financially responsible. Very expensive to cover a 24 hour sitter. 

Is there any agitation at all with either physical or verbal lashing out from time to time that would be documented?  Anyone placing a person must be truthful about such behaviors.  If all agitation is quelled, then I hope that the persons making placement calls is communicating that well.

Has the hospital been badgering the family to take your father home with hired aide care?  This sometimes happens.  If this is going to happen, and Medicare is the insurance, the hospital MUST issue a Letter of Non-Coverage giving the dates the care at the acute hospital will stop (there is a short day period of grace time),   Once the hospital or insurance serves notice that the patient is no longer going to be continued to be covered for acute hospital inpatient care, (usually due to insurance no longer covering or covering poorly); then the hospital will demand patient transfer out or else that the family will become financially responsible for the entire cost of care in the acute hospital which is as imagined, extremely expensive.

As for an attorney's office seeking the placement - this is certainly not what one usually sees done.  I would also imagine that a staff member is doing this and I would question just  how skilled that person would be at placement interactions.  Do you know why an attorney is doing this?  The cost must be horrendous.

NOTE:  If a person is a "private pay" patient, paying for custodial nursing home care out of pocket, it is not nearly as difficult to find placement.  If Medicaid is to be the payor for custodial care, and the patient is "Medicaid Pending," then if family can pay for one to three months up front while waiting for Medicaid to come through, it is easier to place.  This is because if the Medicaid application is denied, the facility is not going to be lacking reimbursement for the time there.  It must be noted that if Medicaid is expected to be the payor, one must contact only those care settings that have a contract with Medicaid; not all do, some are private pay only. (If Medicaid is expected to be used, that may be why some of the denials if facilities are called that do Private Pay only.)

Sometimes, when a nearby custodial  placement cannot be found; the circle grows wider and wider in the search, often with placement taking place far from home.  I have seen Members here who have had Loved Ones (LOs) who had to be placed 100 - 200 miles away from home.   As for falls; there are indeed beds that can be set close to the floor so it is not a fall, but more of a roll out of bed; sometimes a soft mat is placed next to the low bed.  If the falls are from a wheelchair, etc. that makes things riskier as facilities are not allowed to use restrictive devices to keep patients in place. 

Suggestion:  The Alzheimer's Assn. has a 24 hour, 365 day a year Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can often assist us with our problem solving.   They may also be able to put you in contact with an Alz Assn office closer to your area which may have some good input regarding area placement - just a thought.

You are a wonderful advocate who is trying to do the very best; please let us know how you are doing and how things are going.  We will be thinking of you and we truly do care. Your solution to this problem may well help others in the same set of circumstances; we are all here in support of one another and that now includes you too.

J.