Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
My husband and I are recently divorced and cannot seem to agree on anything these days. How can we successfully work together to care for our children with hemophilia?
The fact that you are seeking advice is awesome in that you are looking to do what is best for your children and family. So often when parents separate, it can be very painful for the entire family, especially the children. As co-parents, it is important to follow through on mutually agreed-upon rules and support each other in your parenting roles.
Here are some tips to help minimize the stress of separation on your family.
- Recognize that co-parenting is a partnership and an agreement to do what is best to meet your children’s needs. Develop a plan and realize that this plan will need to be adjusted as your children grow and their needs change. Flexibility is key!
- Inform your children’s medical providers of who the co-parenting participants are. While it is customary for co-parenting to take place between two parents, there are situations when more people are involved, such as stepparents and grandparents.
- Make sure that all parties understand the diagnosis and treatment plans for the children. All parents/caregivers should take the time to learn what medications are needed, how to obtain them, and how to administer them when necessary. Everyone needs to know who to call if the child is experiencing a bleed, how to infuse the child or where to go for an infusion if it is needed.
- Discuss with your co-parent any proposed changes in the treatment plan. Not only is it respectful and helps to reduce conflict, but it also allows the other parent to have any questions answered. If there is a disagreement over the treatment plan, arranging a meeting or phone call with the hematologist and the nurse coordinator can help co-parents get a better understanding of the proposed treatment plan and allow for compromises, if possible.
- Schedule appointments and procedures at a time that’s convenient for both of you. If this isn’t possible, suggest that the parent who cannot attend be present virtually instead. If only one parent is with the child when he or she receives medical attention, all relevant details and the after-visit summary should be shared with the other parent. Both parents should ask for access to their children’s charts so they can reach out to the providers if necessary and review relevant medical information.
- If the relationship between you and your co-parent is strained, consider taking a co-parenting class. This class will provide you with tools to support your children through this change and help you work with your co-parent. Using the social worker at your hemophilia treatment center to help develop a plan or to work on areas of concern before appointments can also be useful.
— Denise Lowery, LCSW
Lowery works at the UC Davis Hemostasis and Thrombosis Center in Sacramento, California. She is a member of the Social Work Working Group.
As I get older, I want to make sure my family is supported in case there comes a time when I need help caring for myself. What do I need to think about in terms of setting up caregiving supports as I age?
Thinking about aging and loss of independence can be difficult. Doing things like eating a balanced diet, exercising, and regularly attending your medical visits can help you maintain independence and enjoy your later years. Aging and potential associated care needs will look different for everyone. Rather than procrastinate, proactively preparing your finances and assets and thinking through what you want for yourself can reduce stress for you and your family. These tips can help:
- Get organized. Figure out a system to keep important documents, such as bank statements, insurance policies, wills, pension records, mortgage information and car titles, in a safe, secure place for loved ones to access in case of emergency. Have passwords written down and kept in a safe space to make sure your family has access to pertinent information when needed.
- Create an advance directive and appoint a healthcare proxy. There is some confusion about the various documents needed to express healthcare wishes, and for good reason. Names of these documents and their power vary state to state.
An advance directive is a term given to written instructions regarding your preferences for medical care if you are unable to make decisions for yourself. This document guides doctors and caregivers to make the best choices for you based on your wishes. It is important to consider what choices you might make when faced with difficult healthcare decisions at the end of your life.
A healthcare power of attorney (also called a durable power of attorney) is a type of advance directive in which you appoint a person you trust (known as a healthcare proxy, healthcare surrogate or healthcare representative) to make medical decisions on your behalf if you are unable to do so. This person is not tied to your finances. He or she is appointed only to make healthcare decisions. It’s important to consider who you would want to make these choices for you if the circumstances called for it.
Sometimes, even if you write down your end-of-life wishes, they don’t make it into the hands of your medical provider. Therefore, make sure you appoint a specific person and fill him or her in on your choices.
- Get up to speed on insurance. You can sign up for Medicare starting three months before you turn 65 (unless you are disabled, in which case you may be eligible earlier). Navigating this program can be complicated. AARP’s website and others have detailed information that can help.
Keep in mind that Medicare does not cover long-term care in a nursing home or an assisted living facility. It also doesn’t cover in-home care, such as help with cooking, cleaning, laundry, and other activities of daily living. As you age, you may want to consider long-term care insurance to cover these services.
When you select a Medicare supplemental insurance, you may also want to consider coverage for infusion companies, as Medicare alone may not cover at-home infusions for factor.
- Educate your family members. As many people are switching to injections rather than infusions, it is important for family members to understand when factor might be needed, regardless of your prophylactic regimen. Educate your family members in advance about what bleeds look like so they can help you be proactive in your hemophilia care as you age.
— Amanda Stahl, MSW, LICSW
Stahl works at the Boston Hemophilia Center at Brigham and Women’s Hospital. She is a member of the Social Work Working Group.