How to be a patient advocate without being a pain

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Most of us have encountered an experience where we had to advocate for a loved one in either a hospital or long-term care setting. Communicating our loved one's needs and concerns with the employees of these types of organizations can be a challenge. Many people have fears that if they raise a concern their loved one will receive subpar care in the future. Others procrastinate, resulting in issues becoming huge and explosive. Here are eight tips about how you can support your loved one:

1. If you have recently moved your loved one from one setting to another, it typically takes about 90 days for folks to adjust to the change in living environment. During this time, you need to bear in mind that your family member is grieving for the loss of the place they used to call "home." You may encounter emotions from them such as anger, resentment, or even sadness. They may see everything that is going on in the facility as terrible and unappealing and it may be very difficult for you to tease out facts from exaggeration. If there is a cognitive impairment involved, you may find that your loved one is even more confused and that they experience new behavioral changes. It is important to seek the advice of the staff of the facility with respect to how to structure your visits, and how often to visit. The staff members can also give you tips and tricks on how to handle your own emotions when faced with a loved one who may be unhappy for a while.

2. If you are a long-distance caregiver, the stress on you can become compounded because you may be hearing things from your family member that you are unable to validate yourself because of the distance. In those instances, you may discover that an Aging Life Care Manager could provide the eyes and ears you need and act on your behalf when you can't physically be there. Here you will find the national website for Aging Life Care Managers that you can use for the area where your loved one lives: Aging Life Care Manager Website.

3. Visit your loved one as much as you can and at different times. Experiencing their living environment during the off times such as evenings and weekends when the management staff is not there gives you an idea of what their world is like beyond the 9-5 shift.

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4. If you talk with other residents' family members and learn you share common problems, consider getting involved with the facility's family council (typically a meeting of family members that are interested in the quality of life of the residents). If there is not a family council, start one!

5. Start off your loved one's residence in their new home with full disclosure. It is not uncommon for people to want to gloss over the true physical, psychological, and behavioral support needs because of embarrassment or fear they will not be admitted. Not fully disclosing the needs of your loved one is a huge mistake and sets up the new situation lacking the spirit of trust. This can put the staff and your family member in a difficult situation because the staff may not be adequately prepared to take care of your family member. If a facility finds that the admission was not appropriate, you will be

faced with a move. They will not keep your family member and do not have to if they feel like they cannot meet their needs.

6. If you have to make a complaint, be specific. Using generalities is not helpful. When you identify issues, note the date, time, location, staff involved, and the specific incident. Without such information the staff cannot implement a change.

7. Remember that most of the staff working at these organizations truly have your loved one's best interest in mind. It's also important to build a rapport with the staff and also compliment them when appropriate. You would be surprised at how little they hear about the good things. Letting them know what they are doing well goes a long way.

8. If you have a very big worry that your loved one may have been subjected to abuse or neglect and you have not received the response you had hoped for from the facility your loved lives in, you should contact the area ombudsman. According to the North Carolina Department of Health and Human Services website: "The ombudsman investigates and assesses matters to help families, residents and facilities resolve concerns and problems. Common areas of complaints include:

- Inadequate medical and personal services being provided to residents such as problems with medication, nutrition and personal hygiene

- financial concerns such as handling of residents' funds, Medicare, Medicaid and Social Security

- rights of residents, such as the right to be treated with courtesy and to have individual requests and preferences respected

- nursing home administrative decisions, such as admission to or discharge from a facility

- Working with appropriate regulatory agencies and referring individuals to such agencies when resolutions of concerns or grievances are not possible through the Long-Term Care Ombudsman Program alone."

As a patient advocate you need to be politely assertive and be able to both provide respect and command respect from the many others involved in a patient's care. Assertiveness is not the same as being a bully or aggressive. Being an assertive patient advocate means you stand your ground, make your needs known, and are willing to broach a subject that may be uncomfortable.

You want to negotiate with medical professionals and even other family members to get what you need for the patient in a way that is not going to damage long-term relationships. When you confront someone with the patient's needs, you may meet resistance, even if it is with a medical professional. You still need to keep the mindset of negotiating, keeping your cool and thinking about the patient's needs first and foremost. As your loved one's advocate, it is your right and your responsibility to speak up for your loved one, bring up the uncomfortable, and ultimately get your loved one what they need from the staff and family members alike.

If you find yourself in a caregiving situation, we invite you to join our online community of caregivers.
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