My mother has ALS and is a resident of a long term care (LTC) facility in Poplar Bluff, Mo. I’m a registered nurse who works in nursing homes, and yet I still can find myself struggling with the system over my mother’s care.
My mother, Amelda Dees, age 84, depends completely on others for her care. Family members make unannounced visits to her LTC facility at different times and on different days to see if her quality of care changes based on shifts or days of the week. We don’t always like what we find.
For example, when visited mid-week, my mother was found disheveled, fingernails unkempt, dirty hands and malodorous. This was not the first time she was found in such a state. Her hands have started to contract, creating a painful new situation for her. The nursing home explained that my mother refused to wear the hand splints. Their solution was to have a rehabilitation aide do daily massage to her hands. This obviously was not being done because her hands were dirty and her nails long. To make matters worse, floors in the bathroom and room also were soiled. She has started having difficulty drinking fluids, but no attempt or suggestion was made to add thickener to her liquids. MDA has provided her a communication device, but the device was in a drawer in the speech therapy room.
An attempt was made to resolve the issues with the home’s direct care staff and administration, but I felt more needed to be done. My mother deserves proper care, and to ensure her rights, her ombudsman was located online and a phone call was made. Her ombudsman called me back in a short period of time and told me the volunteer assigned to check on residents in our area was a retired registered nurse. This volunteer did respond and help. She will continue to visit my mother two to four times a month, helping ensure some accountability by the LTC facility and peace of mind for us.
Another voice for ALS care
If a care issue hasn’t been resolved even after speaking with the LTC facility (any care facility including private care homes), do not hesitate to make a phone call to the ombudsman in your area.
An ombudsman is a voice for those who cannot speak. Each ombudsman has volunteers who have been trained to go into facilities and address problems.
For example, if a resident wants to sleep in the morning but the staff makes sure the resident is at the breakfast table anyway, an ombudsman can help. Issues regarding inadequate hygiene, privacy, wound care management, pressure ulcers prevention, lack of equipment and lack of staff education regarding individual needs also are worthy of a call to your ombudsman.
Residents have the right to be restraint free, pain free, and allowed to do what they would normally do if they were in their own homes. For example, if they’d like to have a pet, or a visit from a pet, arrangements can be made to accommodate them — often creatively, depending on the pet.
People with ALS have very specific needs that must be addressed with LTC facilities, such as:
- careful range of motion exercises for comfort and mobility;
- proper toileting schedules to maintain regularity;
- communication devices that are available at all times;
- thickener for fluids when swallowing is a problem.
The list goes on, but the main point is to speak up if your particular need has not been met. After discussions/consultation with the long term care staff, are they attempting to accommodate your wishes or needs? If the answer is no, then it may be time to call the ombudsman.
The ombudsman program operates in each state, and is funded by the U.S. Administration on Aging.
Online, the National Long Term Care Ombudsman Resource Center at www.ltcombudsman.org can direct you to your state ombudsman. By phone, call the national center at (202) 332-2275, or check local listings for your Area Agency on Aging.
Another way to find the phone number for your ombudsman is to check within the LTC facility. The facility is obligated to place the ombudsman phone number in a public area.
My advice is to not hesitate to call your ombudsman. They can be additional eyes, ears, and especially voice to the ALS patient who can no longer speak for themselves.
Belinda Douglas, Ripley, Tenn., is studying to become an advanced practice nurse in gerontology. Her mother received an ALS diagnosis in the spring of 2008.