Family Expectations of Skilled Nursing Facilities

Many years ago I too, was an adult child of a dementia resident at a facility and had some unrealistic expectations about the differences in care provided at skilled nursing, assisted living, and the existing regulatory bodies in place to ensure an acceptable level of care at these facilities. Having been a family member who went through a dementia experience with a loved one, I found it changes you forever. I hope this post gives you a small peak into my world which is now your world as well.

You just can't place someone in a “home” these days. The law regulates that you have to be found medically necessary to be considered for admission then you either pay privately approximately $8000/month or one applies for Medicaid. It has become harder to qualify for a Medicaid admission which is why elder law attorneys have devised various products to protect the community spouse's assets through Medicaid Planning. Should you have a parent with dementia who may eventually need admission to a nursing home these trusts or annuities could potentially allow a parent to become eligible for Medicaid. Of course if there aren't any assets and a parent or spouse has not gifted assets to a family member for a period of five years before applying for Medicaid, then he/she will automatically qualify for Medicaid and no advance planning will be needed. But the potential resident should not have gifted for five years prior to the application.

So your mother is in a hospital room for 3 days and has been discharged for rehabilitation to a nursing facility for a rehab stay in which Medicare pays. If she improves and goes to an ALF or her own home, then they have successfully rehabilitated her. If not, and she is found to be medically necessary, then she could be a candidate for long term care (the Medicaid side of the nursing home). If she exhibits continued confusion and agitation they may start medicating her (especially if she already has a history of disruptive behaviors and has been prescribed medications through a community psychiatrist). If this happens she might not make progress in physical therapy and they will discharge her because Medicare will not pay if there is no progress. A suggestion to family members: Keep an eye out for “over medication” which is sometimes used when someone starts getting out of bed due to confusion and becomes agitated with staff. Your parent may walk a fine line between ALF-appropriate and nursing home appropriate. I know you want the best for your family member, but time spent in rehabilitation will be a fine balancing act and family should be gauging how a parent does on a daily basis, speaking with the staff (nursing and PT) to determine how he or she is doing. If there will be no family or friends visiting, then hire a geriatric care manager. Provide caregivers as they can be a big help, working with a GCM and family, transporting the resident to meals... physical therapy...stimulating activities...and personal care. In lieu of family, a GCM places a medical release into the patient's chart giving her access to review the chart from time to time to see what is being done, what goals have been established, and how she is meeting or not meeting those goals. A GCM would especially monitor if any sedatives are being given and can identify which ones they are. If mom is confused and has attempted to get out of bed and you found her in front of the nursing station when you visited because they saw she had no private caregivers, chances are they have already called a psych consult to have something prescribed.

About bed rails. If mom or dad has dementia and you are not going to have private caregivers to prevent them from getting out of bed or falling at night, you have already heard that you cannot have the bed rails in a raised position because AHCA considers this a physical restraint. I would suggest that you speak with the Director of Nursing or the Administrator to see if the POA or heathcare surrogate could sign a waiver accepting responsibility in raising the bed-rails at night. This just might release the home from liability or an infraction from the Agency of Health Care Administration (AHCA) and may provide your loved one with a little more security in bed. If a parent sun-downs and tries to get out of bed to elope at night and has no caregivers in place, he/she might be sedated. In this case, a parent may be too weak to do physical therapy, Medicare will discharge him/her, and you will need to make a sudden decision. If you have a care manager use her. Having a parent with an Alzheimer’s diagnosis is not an easy thing for any family member, but a care manager has the experience to prevent a lot of problems. You need to trust in that person's experience. By the same token, placing a parent in a nursing home or an ALF is not a panacea. With a dementia diagnosis a particular burden is placed on everyone concerned. ALFs don’t do dementia well. They will tour you through a pretty building and show you all the nice amenities, but the world of an Alzheimer’s patient in an ALF that was built for the non-dementia resident is very different indeed. Those with Alzheimer’s often go to a different floor or a lock down unit where they are basically kept away from the other residents. Make sure they show you that part of the building before you sign on the dotted line. Nursing homes on the other hand, may sedate residents to keep them quiet (although that is considered to be a restraint by AHCA – just like the bed rail).

Care Planning:If a parent is in a nursing home for rehab, he/she is entitled to an Interdisciplinary Team Care Plan meeting as mandated by law. Your parent’s goals and how they are being met on a given day is entered on a computer system and recorded at approximately 21 days after admission. A Care Plan Meeting is then scheduled and family or a GCM is invited by the social worker and the resident is invited. Members of the team consist of the Social Worker, Activities Director, Physical, Occupational or Speech Therapy, Dietitian, and the Director of Nursing. All goals are addressed at this meeting. It is a very important meeting and even when family members attend, I like to be present if one of my clients is in a rehab facility. I know what questions to ask and how to elicit good responses from the team. Because of my experience in care planning at a nursing home/rehab center I am aware how sometimes because of time constraints concerns might be swept under the table, so I do my bit of advocacy on behalf of a client at these meetings. The Care Plan is the best venue for resolving or voicing a resident's concerns. If your parent ever gets transferred to long term care in a nursing home, Care Planning is done on admission, and every quarter after that. Then an Annual Care Plan is done with a full review by all disciplines and families invited to attend. Make sure you stay on good terms with the social worker and that she invites you by letter or phone. When a facility is scheduled for their annual survey, you can be sure the Surveyors will be ready to examine the facility's care plans done for the year by their individual department heads. This is a big area of concerns for a nursing home facility and a very important reason why continuing documentation is essential for the staff. As we were taught, if you didn’t document, it didn’t happen.

It is not easy to navigate the world of Alzheimer’s as you are now beginning to find out. There will be difficult decisions ahead and there is no ‘magic’ placement for a person with this disease. In the best of all worlds, the best place to age-in-place is the person's own home.

If you are only at the beginning stages with a parent who has an Alzheimer's related disorder, there is a long road ahead. Contact a Professional and Certified Geriatric Care Manager by using the search engine at http://www.caremanager.org A care manager can help you navigate the troubled waters of Alzheimer's whether aging in place at home, being discharged from a hospital, or seeking placement at a facility. Please feel free to share this with any family members if you would like to do so. Once a family member goes through this with a loved one, it changes you forever. At A Good Daughter Elder Care Management, we facilitate a Dementia Support Group for Family Caregivers free of charge on the 3rd Wednesday from 5:30 pm to 7:30 pm. Please r.s.v.p. via email to olga@agooddaughter.com

Olga Brunner was recently accepted as Expert Witness in Eldercare by Round Table Group, Inc.