What housing options are available?
My 79 year-old mother had a stroke in February. The kept her in the hospital for two weeks. While there she received a pacemaker and we were told she had aphasia and numerous other health issues that required care in a skilled nursing facility.
There was a bed in the one in our hometown. She was transported there by ambulance, and has been there for three heartbreaking months with no improvement. She will would never be able to care for herself or be managed at home - even with around the clock care. She is able to walk but constantly falls. She also talks frantically, incoherently and incessantly. Most of the time she is in a constant state of frightened and panicked delirium. The doctors have attempted to come up with medication, seat-belted wheelchair and bed alarm solutions. Nothing has come close to calming her or keeping her quiet and still.
My brother, a neighbor and I spend at least two hours daily there trying to help - but she's getting worse and worse, and more and more agitated, Although we spend time there, the nurses are constantly calling and saying we have to come and do something with her. Sometimes they call us yelling about her behavior and we can hear her yelling frightened in the background, If possible we go and try to help. They are receiving Medicare for her care, and she has a private insurance that will pay the 80% after her Medicare 100 days end. In addition we are paying $1500.00 - the total of her Social Security and work pension to them each month.
My question is what do we do? I understand that they don't provide one on one care as they have so often said. What other options are there?
Expert Answer
What a nightmare!! What’s worse is that it’s hard to say whether the nursing home staff has tried everything possible to get a handle on things or whether they’ve become accustomed to calling you as the first action step whenever something happens. The latter is a distinct possibility in this case.
To begin to bring some order to this situation I would suggest the following:
A) Schedule a family meeting with the physician at the nursing home.
B) In that meeting make it crystal clear that you and your family cannot continue to be on-call two hours per day and that you do not have the money to pay for one on one care.
C) Ask for a written list of the medications that have been tried and the dosages. (This is important because not everyone responds to a particular medication in the same way. When difficult symptoms are present, experimentation with various combinations of medications and dosages is often needed to find what works.)
D) Ask for an accounting of the efforts made by the physician to experiment with various titrations of medications.
E) Get in touch with the primary care physician who was following your mother prior to the stroke and request that he or she consult with the nursing home physician regarding the medication.
If nothing else, this meeting will convey to the nursing home staff that the responsibility for “fixing” this situation does not rest with you and or your family. It sounds like they are trying hard to convince you that it does, but this isn’t true. At the end of the day, they are the medical professionals and they are being paid for her care.
A few last thoughts would be:
1) To contact the local Ombudsman office in your area, perhaps even prior to the meeting. The Ombusdman is charged with overseeing the conduct within nursing homes and to assist the family in advocating for the needs of the patients when necessary. It couldn’t hurt to consult with a representative about what you have been experiencing. Here is a link to a searchable database by state: http://www.ltcombudsman.org/about-ombudsmen.
2) Begin researching other nursing homes for a possible transfer. It's horrible to say, but nursing homes sometimes have beds available at a moment's notice for a reason. Just like finding the right medications to calm a distressed patient can take time to find, so too can the right nursing home.