Symptom Management
When You Need Outside Help
Home Health Care
Hospice And Other Outreach Services
State Funded Programs
Placement
Caring for your child at home can be a rewarding experience, assuring you that your child is living the best life possible under the circumstances. It can also, however, be demanding, stressful, and emotionally draining. There probably will be times when you feel that you simply cannot care for your child on your own. At these times, several options may be available to you to help “lighten the load.” Some of these include: respite care(see Coping), home health care, hospice, and placement. (Consult Additional Resources Section in the Appendix.)
When evaluating the alternatives that are available to you, it is important to check whatever insurance coverage you may have. Unfortunately, insurance policies are sometimes written in such vague or complicated language that it is difficult to know exactly what help might be provided. Or, as is often the case, a policy may provide for quite extensive hospital stays but have no specific provisions for home or hospice care. If you are faced with either of these scenarios, it is important for you to sit down with an executive from your insurance company and talk frankly about what lies ahead. It is possible that you can work out a solution that is of mutual benefit for both you and the insurance company.
“My insurance provided generous hospitalization benefits. Since I was intent upon keeping Maggie at home, I asked that instead of paying exorbitant hospital fees, would they consider reimbursing some home care? After numerous discussions, the insurance people finally realized that it would be cheaper for them if Maggie was at home rather than in a hospital. A side benefit, of course, was that we would be happier too. They agreed to pay for as much home nursing care as was needed.”
Home health care aides can help in numerous ways. A health care aide can free you to do the things you cannot get to when you are caring for your child. An aide can provide a “mini-medical check-up” in your home. No matter how well you know your own child, there are times when a nurse or other health care professional may detect a specific medical problem and may be able to suggest helpful solutions. For some parents, just having an experienced health care professional in the home alleviates some of the stress, allowing them to feel more comfortable and confident in caring for their child.
It should be noted, however, that parents do give up some privacy when someone else, anyone else, is in the home. This is really a personal preference issue: to some the benefits of at-home care outweigh the loss of privacy; for others, it is preferable to take care of the child themselves, rather than work with another caretaker.
“Our home aide was a life-saver for me. She was so helpful. Sometimes what was most important was that she just assisted with other tasks around the house so I could care for Ellen undisturbed.”
“We had nursing care during the day so that we both could work. Having nursing care for one night a week was a blessing for us, though. Even though our insurance provided for more coverage, we felt that we wanted some family time without anyone else around. Also, we wanted to take care of Andy ourselves.”
Hospice And Other Outreach Services
Your local hospice program or Visiting Nurse Association may also be able to provide health care assistance in your home. The mission of these organizations is to give help and support to families coping with terminal illness. Again, some families welcome this kind of help, and others may not be comfortable with it.
“Hospice and my family cared for Josh. We were assigned caregivers for four hours a day, two days a week. They were trained professionals who took care of Josh. They would run and pick up prescriptions, run to the ER with me and would assist any way they could. They helped us with the funeral arrangements for Josh and have continued to support our family even today. They became our friends, a part of Josh's life. I am truly grateful to them for what they did.”
Many states have specialized programs in place to help families with children like ours, so don't forget to check into this possibility as well. Different states provide different benefits, but many can assist you in getting low-cost help in your home, or even providing respite care at no charge. If dealing with bureaucracies sounds like just another headache for you right now, perhaps a friend can help. So many times others ask us if there is anything they can do for us. What a valuable gift it would be for someone to help by researching state-provided services for you. And by all means, be sure to check with NTSAD. Resource files are continually being gathered and updated and are available to any interested parents.
There may come a time when you consider placing your child in a nursing facility, particularly if you have no insurance covering at-home help, and few other resources or alternatives are available to you. The decision to place a child is not an easy one, but sometimes it is simply the best one for a family.
“I just couldn't handle it anymore. The strains on our marriage and life were unbearable. I'd had enough.”
“For me, placement has allowed me to get on with my life. I have recovered from the strain of caring for him at home.”
“We have the ideal set-up. The nursing home is near my home and job. It has become a second home for the rest of the family and the staff have become our friends. And the time I spend with him now is just in holding him and loving him.”
If you are considering placement as the best alternative for you and your child, there are several sources available through NTSAD that may help you in making your decision. It may be especially helpful for you to talk to other parents who have placed their children. Members of the NTSAD Parent Peer Group (PPG) make themselves available to talk to other families of children with progressive neurological diseases. These PPG members are simply parents like you who have lived through or are currently going through a similar situation. In talking with other parents, you can express your concerns and questions and learn from their experiences. They are an invaluable source of information as well as understanding.
“Talking with other families who had decided on placement helped me to feel better about my decision. Since I have gone through this experience, I have been able to help other families as well.”