Is A Nursing Facility an Option for Me?
Given the choice, a person with ALS will select staying at home with home-health care or family members assisting with daily needs throughout their struggle with ALS. However, as ALS progresses and financial resources are depleted, a move to a skilled nursing facility may become the better option. For example, if a person lives alone and is dependent on paid home healthcare assistance for more than 12 hours a day, it becomes more cost effective to reside in a nursing home facility. This page is filled with tips and concerns to make this transition smooth. Remember, some nursing facilities have waiting lists. If your name is on the list and you are not ready for that extensive care, you have the option to decline and your name should go back to the end of the list. So, research and visit facilities prior to needing to move in immediately.
What questions do I ask?
When meeting with different nursing home staff it is important to have them answer specific questions.
1. What is their previous experience caring for a person with ALS?
The staff of many nursing facilities has never cared for a person with ALS; this does not necessarily mean the nursing home should be ruled out. Who is the doctor on staff and/or can transportation be arranged to a multidisciplinary ALS specialty clinic?
2. What is their willingness to train staff on ALS associated special needs and how to care for and communicate with the person as the disease progresses?
The nursing facility should be willing to hold in-service trainings on general education regarding ALS and the specifics of what you will need during your stay. Some concerns are: G-tube management, bi-pap management, range of motion exercises, transfers, and specialize equipment are areas that may require instruction and varying set-ups. Trained staff, from the local chapter of the ALSA, is a valuable resource for the provision of staff training in the general progression of ALS and the care that may be needed.
3. Can a specific care manger be assigned who is familiar with the issues associated with ALS?
The management must be willing to have a primary case manager appointed to you. This staff member will be an important advocate as ALS progresses and care becomes more specialized. This person should also be familiar with community resources available to you.
4. Ask about inspections, ratings, accreditations, contracts, and costs. This is public information
Medicare does NOT cover the cost of long-term care. Medicaid does. Long-term care insurance policies, veterans' benefits, and private resources are also used. Consulting an attorney to examine your finances is a good tool when examining a nursing facility as an option for long-term care. Loneliness, loss, and grief are part of any transition. Seek the support you need and address these emotions from the beginning to make this a positive experience. Choose the location wisely and try to stay local to your community and close proximity for family and friends.
Nursing Facility Special Concerns for Residents with ALS
Mobility Equipment/ Speech Generating Devices (SGD)
The person with ALS should acquire a power wheelchair and SGD through insurance prior to admit date of the facility. Once a power wheelchair and/or SGD is delivered the person will be able to use these devices in the facility.
Medicare will not pay for a mobility device or an augmentative communication device when a person resides in a nursing facility. Medicare regulations state that the facility is responsible for providing such devices for their residents. This means that nursing facilities usually provide a standard manual wheelchair or a low tech SGD for the residents - which can be inappropriate for most persons with ALS.
Residents of Nursing Facilities are still able to take advantage of Hospice benefits. Benefits include extra assistance with bathing/feeding, pain management, Chaplin services, and volunteers.
The ways that you deal with the nursing home staff is vital to good care at a nursing facility. Most of these are simple and expensive. Everything in your room needs to have a specific place so that multiple caregivers may always know where to look for the item.
For example, the blanket that is used to cover you while seated in your electric lift chair needs to be folded and placed on the chair. Even labeling the drawers so that items are easily found, is important for the person with ALS who has difficulty communicating.
Post signs around the room regarding the details of specific activities. A sign may read: "Thank you for doing Range of Motion exercises. Without range of motion my joints would become stiff and I would have pain with dressing and movement. But I don't! Thank you!" Or: "Cold Alert! Please wear a mask if you have any signs of a cough or cold. My lungs are very weak now and I get any cold it will be dangerous for me!!"
In dealing with nursing home staff you also need to have an emergency call light in addition to the regular call light. You will use this special call light when you need immediate assistance and the staff will know they should respond without any delay. You might use the regular call light to alert the staff that you need to toilet but use the special call light if you start to choke or have difficulty breathing.
There are alternative switches that interface with the call light system so that access to the call system is available for every muscle movement.
As ALS progresses, communication becomes more difficult but technology supports communication throughout the course of ALS - whether low tech or high tech.
The E-tran is a clear plastic board with clusters of letters located around the board. As the caregiver holds the board so that the ALS patient's eyes can be seen in the middle of the board, the ALS patient looks at the cluster of letters, then at the location of the letter itself. The caregiver begins to repeat the letters selected, forming the word and then the thought. Successful use of the E-tran requires training with staff while you are still able to verbally communicate so that you can teach them your eye movements.
High tech (Augmentative Communication or Speech Generating Devices)
The staff must understand how important it is to have the correct set-up and adjustments as your needs change so you can voice your needs and concerns throughout the course of ALS.
It is important that a person with ALS have a friend or family member to visit as often as possible to make sure the nursing facility is adhering to the care plan. An advocate can help make living with ALS in a nursing facility a positive one.
Contact your local Ombudsman Program - this is a volunteer who will advocate for your care. Check with your local Eldercare office or Area Agency on Aging to locate the nearest representative for your geographical area.
Contact your local chapter of The ALS Association to become a member of your care team.