Truly, it is allowed to weep. By weeping, we disperse our wrath; and tears go through the heart, even like a stream. - Ovid
I have been where you are now. When someone you love has a paraneoplastic neurological disorder, it is easy to feel alone, helpless, and, yes, at times, hopeless.
Whether the person with paraneoplastic is a spouse, a parent, a child, a sibling, a dear friend, it often seems as though your world is constantly shifting. Every day seems to bring a new change in your loved one's condition, a new loss of something you once shared, and new fears about the future.
It is normal to feel overwhelmed, angry, frustrated, and afraid at times. It is also normal to have moments of sheer beauty, when you find yourself filled with love for your loved one, and amazed at the many blessings that you have, even in this difficult time. Let your emotions flow: feeling them doesn't make you weaker, it makes you stronger. And, you will get through this, one step at a time.
Be kind to your loved one, but also be kind to yourself. Forgive yourself for sometimes not being able to do it all. No one can. Take care of yourself: You can not care for anyone else if you do not take care of your own health and spiritual needs first.
Most importantly, you can not do this alone. It is critical to have the support of others to turn to talk about your feelings. Friends, relatives, clergy, health care workers, and other caregivers want to help, but you must let them. May you find both strength and beauty along the path.
Caregiving Support and Information
Caring Connections has many excellent resources for both caregivers and patients covering care and financial planning, general caregiving, hospice and grief. They also provide a link covering Advance Directives for patients.
Caregiver.com magazine covering topics related to caring for a loved one.
National Family Caregiver Support Program
Caregiver Resource Center
Canadian Caregiver Coalition
U.K. Caregiver resources
Long Term Care/Skilled Nursing Resources
If your loved one must be placed temporarily in a skilled nursing facility, a good resource for comparing options is The Medicare Nursing Home Comparison Database. It will allow you to find out whether a specific facility has had any complaints filed against it, as well as details about the standard of care at specific facilities.
If your loved one is in a skilled nursing facility, a board and care home, or an assisted care facility and you are having trouble having complaints addressed, contact the Patient Ombudsman for the facility through the National Long Term Care Ombudsman Resource Center
If you have questions or problems with medicare or health insurance, every state has a State Health Insurance Assistance Program that can help you find answers. For links to individual State Health Insurance Assistance Program offices, click here
Insurance issues regarding skilled nursing facilities and Medicare: If your loved one needs to spend time in a skilled-nursing facility, the doctor and therapists will perform an initial assessment upon arrival, which will determine the healthcare goals and necessary services. In order for the patient to consider receiving Medicare coverage in the facility, and in some cases private Insurance coverage, the doctor or therapists must believe that he or she continues to need the services and to benefit from them. In other words, the patient needs to keep showing improvement and be wiling to participate in the therapy plan in order for Medicare coverage to continue. If, in the estimation of the staff, this is not longer true, your loved one and you will receive a written notice of non-coverage from the facility when benefits are to end. If you believe that Medicare or private insurance coverage should contine, ask the facility for a "demand bill" which will initiate a second evaluation. If the ruling is not in your loved one's favor, you can appeal to the United Government Services or Mutual of Omaha (phone: 877-647-6528) which handle these appeals for Medicare. The facility will tell you which one to contact. If your loved one has private insurance, you will need to appeal directly through the insurance company. If your loved one is covered by a Mediare HMO, the appeal will be made to Lumetra (phone: 800-841-1602), which contracts with Medicare as a neutral review board.
End of life issues
You can find links to many excellent articles, resources, and information sources related to end of life care at Medline Plus Hospice Care
The International Association for Hospice and Pallative Care maintains a directory of hospice care resources in many different countries.
The National Hospice and Palliative Care Organization offers a searchable directory of hospcice and palliative care providers in the U.S.