| When someone close to you suffers a stroke, the emotional impact can be tremendous, but as anyone caring for a loved one after a stroke knows, the psychological challenges are only half of the story. The responsibility of helping someone through recovery and rehabilitation can be extremely demanding, and there's a lot to learn. Who do you call in emergency situations? How do you find the right kind of care for your loved one? How do you pay for it all? Those are just some of the questions.
Below is a conversation with two stroke experts that might offer you some answers.
Family involvement is crucial, but when does it start?
DAVID ALEXANDER, MD: Generally it starts right at the time of the stroke, and it's often a family member who discovers or helps the patient who's having a stroke get to the emergency room and get to the hospital. Then it continues through the whole process: the acute side of the hospitalization, into the rehabilitation phase and, of course, for the rest of the patient's life.
There comes a point when a person with a stroke goes home. How do healthcare workers know if the caregiver is up to the task of caregiving?
RICHARD ZOROWITZ, MD: In the acute care hospital, we have to determine functionally how that patient is managing, and then we have to interview the family and see whether or not they can care for the patient at his or her particular level. If they can, the patient probably can go home safely. If they can't, then we probably will consider them for a stay in rehabilitation. After we have a chance to evaluate them in the rehab setting, we'll get the family to come in to participate in therapies, learn what the patient can and can't do, and learn what they should and shouldn't do as caregivers.
When we feel that everybody is safe and the family feels that they're comfortable enough to take the patient home, the patient then can go home.
When you say "we," who's actually making that determination?
RICHARD ZOROWITZ, MD: "We" really refers to the team. It's the rehabilitation physician, nurses, physical therapists, occupational therapists, speech pathologists, neuropsychologists, recreational therapists, and anybody else that we bring in.
What kind of training does a family member actually have to have, if any, before they are ready to take their loved one or friend or family member home with them?
DAVID ALEXANDER, MD: We train families in a variety of things: the proper technique of how to help someone either walk or make a transfer to the wheelchair to the bed. We train them in fall recovery, and how to help get them up if they do fall. We train them in how to help the patient help themselves with their daily activities of getting dressed and getting to the bathroom, and we train the family in any type of therapy techniques they may need for either language function or for physical therapy techniques.
This is a big responsibility. Is there anything you do to prepare a person for this?
RICHARD ZOROWITZ, MD: We try to give them as much training as we can in the rehabilitation facility. What we also do is have them come in if we see that there are potential stressors that might make care difficult. We'll have them start seeing the psychologist in the rehabilitation facility so we can start dealing with some of those things. What we can also do is make referrals to them for support groups, both patient support groups and caregiver support groups, so that when the patient and the family go home, the caregiver doesn't feel isolated. This is a wonderful way to network so that they can find out ways that other people are dealing with some of the same issues that they are dealing with.
What about the incidence of depression in caregivers? Do you see this a lot?
DAVID ALEXANDER, MD: Yes. It's a very stressful job, being a caregiver, and there is a higher incidence of depression and medical problems. Caregivers are so focused on the needs of the patient that they neglect their own care. They don't get to see the doctor. They don't take their medications properly, or they overstress themselves physically. And they are more frequently depressed than other people because they're dealing with this new substantial life change for themselves.
RICHARD ZOROWITZ, MD: There are some recent studies that even suggest that caregivers who are stressed may even have a higher rate of death than caregivers who are taking care of themselves.
Is there a way to get them relief so that they can take an hour to do whatever they need to do?
RICHARD ZOROWITZ, MD: We encourage a respite from the duties of being a caregiver. There aren't many organized programs that can do things like that, but obviously, the larger the social net of the patient, the more friends and family they have, the easier it is for them to take a break and take care of themselves.
What about the cost associated with caring for someone?
RICHARD ZOROWITZ, MD: Costs can be somewhat prohibitive for some patients, and if they don't have the financial resources, then it makes it much more difficult. Sometimes patients and families can reach out to their churches or synagogues, and find more informal networks where they can hire somebody for somewhat less money than it might be through a home health agency. But these are people who may not be as well-trained as some of the caregivers that come from the health agencies, so you have to take all of that into consideration.
Does insurance cover it at all?
RICHARD ZOROWITZ, MD: Since it is really considered custodial care, usually it doesn't.
DAVID ALEXANDER, MD: It's often a major shock to families when they realize that a lot of these things aren't covered by Medicare or their insurance, and it can be a very big financial burden.
RICHARD ZOROWITZ, MD: What I think is really very interesting is that under Medicaid, you might be able to get paid to be in a nursing home, but to get paid to be home, which, really, is a lot less expensive, it's usually left to the family.
What about long-term care insurance? Would they cover something like that?
DAVID ALEXANDER, MD: I believe that there is insurance you can buy to cover that gap that we're talking about, where patients may need assistance at home, things that aren't traditionally covered by insurance, and if they bought the insurance ahead of time, that may be helpful.
RICHARD ZOROWITZ, MD: However, it's important just to make sure that they read through what they are purchasing, because it may not be necessarily what they expect it to be.
If a caregiver is having trouble psychologically, physically, emotionally, where would they turn for help?
RICHARD ZOROWITZ, MD: They can probably turn to the rehabilitation team that served the patient, because we will have some of those resources that the patient's caregiver might need. It might mean going to a psychologist and trying to deal with some of those issues themselves. It might mean going to a support group for caregivers in order that they can network with other people.
Are there any national organizations that they can call to try to find maybe a local chapter or people who are in the same situation?
DAVID ALEXANDER, MD: Yes, there are. National Stroke Association is one. The American Stroke Association is another. Most places have local stroke chapters, and hospitals or rehabilitation facilities often have their own support groups. |
