From Caregiver to Advocate

My wife, Clare, has Alzheimer’s disease and is living in an Assisted Living Facility (ALF) that has mostly assisted living residents, but also has a separate lock-down unit for people like Clare. Clare’s unit has separate hourly activity programming throughout the day, but residents from Clare’s unit are also sometimes brought to join non-dementia residents for special programs both on and off site.

Because Clare’s unit is specifically designed for people with dementia, aides provide her with all of her medications at the proper times, she is helped with many of her Activities of Daily Living and is generally very well cared for from the time she wakes up until she goes to sleep at night. I would rate Clare’s ALF as an A+ facility both in terms of programs and services provided on a daily basis, and in terms of caring personnel. However, even in the best ALFs there will be days when one or more staff members fail to do their jobs properly, or facility management is not up to snuff, and this is when the role of the caregiver as an advocate can become crucial.

Even though I visit her daily, I now depend upon Clare’s ALF to take care of caregiver responsibilities. I am more advocate than caregiver now to ensure that Clare receives the high quality of care she should have each day. Fortunately, most of the time there is nothing to advocate for because all is well. But when problems do arise, if I were not there to advocate on Clare’s behalf, change might not happen. I may see Clare wearing the same clothing several days in a row, or personal hygiene issues that have been neglected, or there may be occasional food issues. Fortunately, the ALF executive directors have been receptive to my occasional complaints and have taken action to swiftly remedy problems brought to their attention. I have learned that there are several steps a caregiver-advocate can take to facilitate change when necessary:

Five step plan to bring problems to the attention of ALF administrators:

  1. Determine whether the problem is a personal issue dealing with your loved one, or an overall ALF facility issue. An example of a personal issue would be noticing that your loved one is not being dressed in clothing appropriate for that day’s weather. A facility issue would be that a scheduled activity is not taking place.
  2. Try first to resolve the matter with a lower level administrator. For example, notify the dementia unit director or the recreation director or the dining director of the problem you are trying to address.
  3. If the problem is initially resolved but then resurfaces, or is not resolved at all, it is time to make an appointment with the facility manager in charge. Top administrators are very busy people and they deserve the courtesy of a scheduled appointment. Similarly, when making the appointment, indicate the problem that you want to discuss so the manager can be better prepared for your meeting.
  4. Write down what you want to say at your meeting. Even if you don’t read what you wrote, you can refer to your notes if necessary to make sure you have stated the problem accurately. Tell the top manager who you have already met with and what has already been done to try to resolve the problem, and exactly what you want the top administrator to do.
  5. After your meeting, follow up with either a thank-you note or email. Should the problem continue, however, follow up with another note or email to indicate that the problem is continuing.

It is important to remain calm at all meetings with ALF administrators, and to be patient afterwards. Screaming and shouting may allow a caregiver-advocate to vent emotions, but it often makes it difficult for administrators to be receptive to what you are asking them to do. If a personal issue, the administrator may need a few days to resolve the problem. If a facility issue, it may take several weeks because institutions are generally resistant to change.

What you can expect

I have taken these same five steps at Clare’s ALF and have met with success on every occasion. That does not mean that problems which have been resolved won’t resurface again. But it does mean that Clare’s care is better and my visits to her facility are more enjoyable because of my advocacy. Top administrators will usually do all that they can to ensure not having to meet repeatedly with caregiver advocates over the same matters. ALF administrators want happy and satisfied caregiver-advocates who will speak well of their ALF to others. Positive word-of-mouth is one of the best ways for an ALF to continue to grow its potential new client list.

If you want a problem addressed and your meetings with administrators do not lead to positive change within a reasonable amount of time, ask to meet again with that same administrator. If necessary, continue meeting until the problem is addressed properly. One characteristic that separates effective from ineffective advocates is persistence. As a last resort, ask to see if the facility has an “ombudsman” who may be able to help resolve problems.

But whatever you do, do not give up. Just as you did when you were a 24/7 caregiver, you must now do all you can for your loved one as a 24/7 advocate. Regardless of how wonderful that ALF ... or nursing home or hospice setting ... may be, no one will care about your loved one as much as you do. So advocate relentlessly!