Q&A with Paul DelPonte - Caregiving and Lupus

Paul DelPonte, director of programs, operations and development at the National Alliance for Caregiving, answers your questions about caregiving and lupus as part of the Ask the Experts program

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. My husband works as a nurse and is also in graduate school. He is now a full time caregiver for me, but I worry about him getting burnt out. How can I (and he) work to minimize caregiver burn out?

That is a very important and good question. To avoid burnout, it is critical that your husband take time for him. He has a busy schedule to juggle. Letting him control his schedule is one tip. Another important tactic is to build a strong support network of friends and family members. Often, the caregiver doesn’t want to admit burnout. If you see signs that he is getting burnt out, you should suggest he have a free day to go to the gym, be with his friends, or practice other activities that he enjoys.

2. As a caregiver for my mother, what are some financial tips to keep in mind?

The first tip is to make a monthly budget and share it with your mother. Review it periodically with her.  Share bank and other account statements. As in other areas, sharing information and practicing open communication will build a strong relationship. The second aspect has to do with estate planning and establishing more formal financial relationships. For those questions, it is often best to seek professional financial and legal advice.

3. Can you explain a medical power of attorney and the importance of having one for a caregiver?

A medical power of attorney, also known as a durable power of attorney or health care advance directive, gives you the power to make medical decisions in the event the person you are caring for can no longer make those decisions. This can happen for a short period of time if a patient is temporarily unconscious or for a longer period of time if severe medical problems persist. A caregiver with a medical power of attorney can also access medical records, agree or refuse treatment, and other medical rights. The patient decides what powers to grant someone under a medical power of attorney. It is important that the patient select and trust the person that will be receiving medical power of attorney. Both people should have an open discussion about the type of care the person does and does not wish to receive. 

4. What is the best way to deal with disagreements when there are multiple caregivers?

Thank you for this question. Many times we all hope things will work out well, but reality and experience tell us that disagreements will arise, even in the best of situations. While the nature of the disagreement might be a factor, the first step in solving a disagreement is to make sure everyone is aware of the issue. If schedules allow, it is often a good idea to have everyone together to discuss the problem. Often, problems can be a result of caregiver stress.  It is important to recognize the hard work everyone is doing and to say that different viewpoints are likely to occur from time-to-time. If the disagreement is over your care, you should let everyone know what your preferences are and ask them to work within those guidelines. In the end, everyone is working toward the same goals and most disagreements can be worked out by listening to all sides.

5. My father has long term health insurance. What are the pros and cons of this insurance?  Is it true that, as his caregiver, I can be designated as his qualified healthcare provider and the payments can come to me, to help assist him at home?

Long-term care insurance policies vary widely. They can protect you and your family against financial loss as the result of a long term illness like lupus. Policies are often expensive and few families have them. Not every insurance company sells long term care insurance because of the cost and difficulty in making policies attractive to consumers. Since your father does have a policy, you should absolutely contact your father’s insurance company and see what the benefits for home health care include, and whether you can qualify as his care provider, as requirements vary from policy to policy.

6. Caring for my wife with lupus can, at times, be very stressful. Are there any helpful hints for ensuring my own emotional and physical health?

An important thing to keep in mind is that you will be the most help to your wife if you are healthy. Taking care of your own health is very important and it’s great that you can recognize you own needs. Often, caregivers neglect their own medical needs because they are busy taking care of someone else. It is important to schedule your annual physical and other medical and dental appointments. That might require a little extra planning, to ensure that someone might be available to help your wife that day. Building a support network of friends and family who can help pitch in is important. Setting aside time each week for you is also a practical solution. Your local Lupus Foundation of America chapter may also offer caregiver support groups that can provide tips and information close to home.

7. What is the best way to keep my child’s school up to date with her lupus status?

Having a good working relationship with the school and your child’s teachers is a good start. In some instances where lupus is affecting your child’s academic performance, the school may be required under federal law to create a 504 plan or an Individualized Education Plan (IEP). These are formal documents used by school systems to make classroom and other accommodations your child could benefit from. You can ask your school’s principal if they have an IEP coordinator or talk to your teacher to see what is right for your child.

8. As a caregiver for my mother who has some significant health issues with her lupus, should I be certified in CPR? What are the Good Samaritan laws as they apply to caregivers?

CPR and other medical training can always be useful for caregivers and others; especially if you think you might need to put the training to use. Good Samaritan laws vary by state, but generally, they protect someone that is providing uncompensated care. Many apply to situations where a stranger or bystander provides care in unexpected situations, like at the scene of an accident or in disaster relief. A family caregiving situation is different. There is a long-term relationship where consent to be the caregiver is part of day to day life. 

9. If I go on vacation and leave my mother with a friend or other family member, do I need to get them a special power of attorney in the event that a medical issue comes up?

Unless you will be impossible to reach or it will be an extended vacation, you should probably maintain medical power of attorney. Make sure everyone has your contact information before you leave. If you are traveling internationally, check with your cell phone carrier to see if you can receive international calls.

10. What do I need to have in place in the event that I become incapacitated or die and the care of my mother has to be taken over by someone else?

You should keep a folder with all your own medical, insurance, and financial information, as well as information about your mother. It is always important to have a will and other formal documents in place that identify who will care for your mother after you. You can consult your family attorney or another legal expert to set this up. The most important thing is to identify someone you both feel comfortable with in taking over the care of your mother. Talk to that person and start to involve them in your mother’s care. Having them provide some respite care or relief for you is also a good idea, even if you never become sick or incapacitated. 

11. I have been taking care of my mother with lupus for several years. It scares me to think about what I am going to do when she passes. Do you have any recommendations on how to deal with the loss of a loved one that you have been caring for?

The loss of a loved one is always a difficult issue. There are a variety of supports available to help. Trained counselors, churches and other faith-based organizations, hospice organizations, and other groups offer support services to help. 

12. Are there any resources to allow caregivers to connect with other caregivers for emotional support and exchange of ideas on care for family members?

That is an excellent question. Many efforts to connect caregivers are in their early stages. The National Alliance for Caregiving works with state and local coalitions. Some have support systems in place, and others are just getting started. Some Lupus Foundation of America chapters offer caregiving support networks that are specific to caring for someone with lupus. If there isn’t one available in your area, this might be an excellent project for you, and others you know, to start.

13. My mother is now living with me full time due to her lupus. How much of her medical information am I allowed to have access to? Do I have a right to be with her during her doctor’s appointments or to have access to her medical records?

The best advice is for you and your mother to talk to your doctor directly. If your mother is comfortable having you at her doctor visits that is probably the best approach. It’s often good for a patient to have another person with them when they talk to the doctors. Taking notes during the visit is also a good idea. Medical information can be hard to understand, especially during a brief office visit with a doctor. Having the caregiver at part, or all, of a doctor visit can be useful in many instances. 

14. Because of my wife’s cognitive issues with her lupus, I give her daily medications to her.  Are there any legal liabilities that I need to be aware of in this role I have taken on?

You are taking on a very important role as a caregiver. The issues around information and coordination are likely more pressing than any legal liabilities with your spouse. Understanding the medications and dosages, questions you might have for the pharmacists or doctor, maintaining a medical adherence schedule, and other related issues are important pieces that you, as caregiver, will need to manage, especially if your wife is affected by short-term memory loss related to lupus. 

15. What medical information should I have of my grown daughter in the event of a medical emergency where she is unable to provide the information herself?

Your daughter should keep a folder or listing (that is also accessible to you) with her basic medical information including the names and contact information of all health providers, medical insurance information, all prescription medications, and recent lab tests and results.