Making the Most of Your Parent's Stroke Rehabilitation Team

Quick summary

When your parent has a stroke, you can aid in his recovery not just by supporting him emotionally and physically but by helping to choose and coordinate his stroke rehabilitation team. Here are six ways to help your parent make the best of his new situation.

Why is rehabilitation important for my parent?

According to the American Stroke Association, most of the spontaneous functional recovery occurs during the first three to six months after a stroke. But with rehabilitation, your parent can continue to make progress over the next year or even longer. Rehabilitation can help your parent:

• Make the most of the functional abilities he still has and those that he regains spontaneously
• Learn new strategies to compensate for abilities he has lost
• Forge new neuronal connections to bypass injured brain cells (a process known as brain plasticity)
• Minimize medical complications and reduce the risk of a second stroke

You can't turn back time and give your parent his old life back, but you can support and aid in his recovery. Here are six things you can do to help your parent make the most of his rehabilitation team.

1. Get to know the team members

Your parent will have a team of specialists dedicated to his rehabilitation. His team may include some or all of the following members:

• You. Of all the members of your parent's team, you're the one who probably understands him best. Depending on how much time you can devote to his rehabilitation, your role may range from providing support to coordinating meetings between other team members. At the very least, your love and support can be one of the most positive factors in his rehabilitation.
• Case manager. A good case manager is an invaluable resource. This person serves as the liaison between you and other members of the rehabilitation team and helps you deal with your parent's insurance company. The case manager should also be able to help you find support groups, information about finances, and legal assistance if necessary. Most often, the hospital assigns a social worker to manage your parent's case, but these people are notoriously overworked. If you can't get the help you need from the hospital social worker, you may want to consider hiring an independent care manager. Ask the social worker for a referral, and be sure to check the care manager's references.
• Lead physician. Your parent's doctor is responsible for managing his care and rehabilitation. In the hospital, the lead physician may be a neurologist or an internist. Once your parent is discharged, he may be referred to a physiatrist, a doctor who specializes in rehabilitation. In either case, this person will arrange medical care, manage medication, and oversee the other therapists.
• Rehabilitation nurses. In the hospital and rehabilitation center, nurses will tend to your parent's everyday medical needs and personal hygiene. They can teach you how to care for him at home, showing you how to avoid pressure sores, transfer him in and out of bed, deal with incontinence, and help him avoid another stroke.
• Physical therapist. The physical therapist will focus on your parent's motor functions: strength, endurance, walking or wheelchair use, balance, and coordination. Once your parent returns home, the physical therapist may design an exercise program he can follow between sessions.
• Occupational therapist. Like the physical therapist, the occupational therapist will help with your parent's motor functions, but the emphasis is on normal daily routines. Known as "activities of daily living," these include personal hygiene, getting dressed, using the toilet -- any activity that's part of a person's normal day. For example, if your parent has lost his left visual field, the occupational therapist will work on teaching him to scan for objects on the left side. The occupational therapist can also recommend home modifications and assistive devices that may enable your parent to live more independently.
• Speech therapist. If your parent has any language deficits, a speech therapist can help him relearn how to speak or teach him to communicate in other ways. This therapist can also help your parent work on his cognitive abilities (such as problem solving, decision making, and social skills). Finally, she can help your parent overcome swallowing difficulties.
• Clinical dietitian. Along with swallowing problems, stroke survivors may have incontinence and excessive weight loss. A dietitian will address your parent's specific nutritional needs and can recommend a low-sodium, heart-healthy diet to help prevent future strokes.
• Rehabilitation counselor. A rehabilitation counselor focuses on the emotional aftermath of a stroke, as well as issues that arise during rehabilitation. This counselor will address any depression, anxiety, or behavioral problems your parent might be having. The counselor should also work with you and other family members, offering strategies for helping your parent and even suggestions for managing your own stress.

2. Choose the right setting

Rehabilitation starts in the hospital, as soon as your parent is stable. After two to four weeks of intense inpatient rehabilitation, your parent's team will recommend what step to take next.

• Skilled nursing facility. This type of facility is for patients who are too disabled for rehabilitation in another setting. If your parent is too weak or sick to return home or to an assisted living facility, he may need to go to a skilled nursing facility, at least temporarily.

• Outpatient rehabilitation. This is an option for stroke survivors who are able to live on their own, in an assisted living facility, or in their families' homes. Your parent will go to a hospital or separate clinic for his various therapies. Most outpatient programs have patients come in three days a week, but some are more intensive.

• Home-based rehabilitation. This process usually follows the completion of an outpatient program and focuses on teaching your parent to function in his own home. Alternatively, it's an option if your parent comes to your home instead of a nursing facility but is too disabled for an outpatient program.

Which rehabilitation setting you choose depends on a number of factors, including the extent of your parent's disability, his finances, his living situation, and the location of the facility. Also take into account your personal impressions of the rehabilitation center and staff. Visit the rehabilitation center, interview the staff, and observe what's going on with other patients. Ask questions and take notes. You can print out these checklists or make your own to bring with you:

^* Check the website for the Commission on Accreditation of Rehabilitation Facilities (CARF) or call CARF at 520-325-1044 to find out if a facility is accredited.

Once you've chosen a rehabilitation facility, keep in mind that it's not an irreversible decision. If your parent doesn't seem to be progressing, you can always revisit your selection.

3. Actively participate -- if you can

As your parent's caregiver, you may be able to help by taking an active role in his rehabilitation. Having a caring and supportive family member around can make a world of difference. After all, you're the one person on his team who knows what he was like before the stroke.

But it might not be possible for you to oversee his therapy. Other obligations, such as work or small children, may already take up most of your time. Or perhaps your relationship with your parent is strained and neither of you would benefit from your presence at his appointments. Talk to your parent's care manager and counselor about how involved you can be in his rehabilitation. And try not to feel guilty if you're not able to play a major role: You have your own life, too.

4. Understand the goals of rehabilitation

It's important for you and your parent to understand that rehabilitation isn't a magical cure. The ultimate goals are to help your parent regain as much independence as he can and have the best quality of life possible.

In their book Living with Stroke: A Guide for Families, Richard Senelick and Karla Dougherty discuss how realistic rehabilitation goals can make all the difference. Although dead brain cells can't be revived, rehabilitation can teach your parent how to cope with his losses and move forward. A good rehabilitation team should:

• Evaluate your parent's needs continuously and adjust his rehabilitation plan accordingly
• Watch out for and prevent medical complications
• Provide a structured, consistent, and secure environment
• Teach strategies to compensate for lost abilities
• Encourage progress and focus on the positive
• Stress practical, everyday activities

5. Have realistic expectations

One of the most difficult aspects of stroke recovery to grapple with is the uncertainty. The course of your parent's rehabilitation probably won't be steady; most stroke survivors have periods of rapid progress punctuated by plateaus. And it's impossible to predict what the future will hold.

That said, if you expect your parent to recover completely, you're probably setting yourself up for disappointment. Talk to the members of the rehabilitation team about your parent's prognosis for recovery. And don't just talk to them about it once: Revisit the subject every few months. One thing that's certain is that rehabilitation is a fluid process. You, your parent, and the rest of the rehabilitation team should expect to reevaluate his program -- and your expectations -- on a regular basis.

6. Try to stay positive

It's normal to mourn for what's been lost, but you and your parent also have to move forward. Encourage your parent to do his exercises and make the most of his therapy appointments. Celebrate his successes, no matter how small. Although it's not easy to maintain a cheerful disposition in the face of such a difficult situation, your positive outlook will rub off on your parent.

Of course, it's impossible to be positive and upbeat at all times. Your world has been turned upside down, too. Bottling up your feelings of anxiety and sadness will ultimately take a toll on your own physical and emotional health. Joining a support group for stroke caregivers might give your emotions an outlet and allow you to connect with other caregivers. For more information on finding a support group, see " 5 Ways to Connect with Other Stroke Caregivers."

Sources:

http://www.ninds.nih.gov/disorders/stroke/poststrokerehab.htm#**

http://www.stroke.org/site/PageServer?pagename=REHABT

http://www.naric.com

http://www.aphasia.org

http://www.strokeassociation.org/presenter.jhtml?identifier=3021943