Discovering that a loved one now has a disability can be stressful to put it mildly. At the least, the family must learn what assistance will be required by the patient and make the proper arrangements. In the most significant case, it becomes necessary to determine to what extent the patient will be able to participate in self care. In worst cases, the individual with a disability will be unable to make important, independent decisions concerning their physical, emotional and daily care. This particularly leaves family members in charge of making those decisions that will impact for a lifetime the health and well-being of the family member newly experiencing a disability.
There are several steps involved from the moment of discovery until the individual's care plan is set in motion. This is a complex and most daunting task for everyone involved, so make it a team effort between all interested (and capable) family members, the medical professionals and the individual. Regardless of how capable the individual with a disability is, please do keep them involved and informed as much as possible. This change in lifestyle and care is happening to them first and foremost. Whatever say they can give, allow them the opportunity.
It does not matter how much we love the individual who is thrust into the life change of a disability if we can't take care of them on our own, it is in everyone's best interest to look outside the family for the least restrictive community care, such as a group home, nursing home or high-quality institution. I have an aunt who has struggled with mental illness much of her life and has trouble taking care of herself. She spent many years in an institution when that was the thing to do with family suffering with mental illness. Now that she's elderly and there are other avenues, we've tried group homes, having her live with my parents, but she seems to prefer the nursing home where she is now. Otherwise, we would have her live with us or in a small group home setting. We had the luxury of trying various options. Many do not have that many options, but that doesn't mean to just choose anything. You can still review and critique among the options you have for the best care possible.
If the family member is fortunate enough to be able to stay at home or live independently with supports, it is still important that the proper equipment such as wheelchairs, walkers, and the like are put in place to maximize whatever level of recovery or health maintenance can be made.
Once these arrangements have been set in motion, now begins the real work of living with and accepting the disability. Learn about available resources in your community and determining how much your loved one is able to do independently. Encourage and challenge them toward taking on daily living skills, such as bathing, dressing, going to the bathroom. This preserves their self-esteem and overall emotional health, as well as provides a little bit of gradual physical activity. Get yourself, others and the individual into a daily routine so you are better able to handle things as your life gets back to some state of normal. Also, this helps you figure out how an outside care provider such as a nurse, home health aide or therapists fit into your day.
If your loved one is at home, do you know when the care for the patient is scheduled so you and the rest of your family can resume a regular schedule and receive some respite time? You can't spend 24 hours in care mode. No one expects you to. Even nurses have lunch breaks. You deserve one as well. What about the actual caregivers? Who will relieve them so that they do not become overwhelmed by the responsibilities and long shifts of caregiving? Will family rotate or will a professional come in during certain blocks of time? How will this impact the family's finances or the loved one's savings? Is there insurance or a financial means to supply medication and equipment your loved one needs? Will the retirement plan, long-term disability plan or services such as Vocational Rehabilitation or Veteran's Administration kick in to help? Find out. All of these things can be daunting, but are important to figure out as quickly as possible so various transitions are seamless.
Some families can withstand the pressure and remain together working for the good of the loved one who is transitioning into the disability life, but other families will experience a tremendous amount of stress. Ask for help from other families and friends. Seek spiritual and psychological or grief counseling for yourself as well as the loved one who now has a disability. A life coach skilled in chronic illness and disability may also be able to help you form the long range picture you desire for a successful life from the beginning.
There are also support groups that are condition-specific, such as amputee support groups, veterans support groups and family grief support groups. You are never alone. You may live in a small town with limited resources in your immediate area, but help really can be a computer click or phone call away. Widen your circle and reach out. You may just find out that others are going through the same thing and you can support others who aren't as far along in the process as you are. Learn together.