But in this excitement over development and prevention, the more enduring problem of surviving when your world has been turned upside down can be lost. And despite the improved chances of stroke victims (dying of a stroke is 50% less likely than it was 20 years ago), almost 4 million Americans are currently living with the after-effects of a stroke - 40% living with moderate to severe impairments requiring special care.
When someone has suddenly changed from an able-bodied person to one who is unable to move one side of their body, who now has difficulty communicating, who has a new tendency for emotional outbursts, exclamations over the wonders of medicine may sound a little hollow. Significant changes may take place in that person's relationships, in their feelings, in their independence. In particular, the relationship between the stroke sufferer and their caregiver may unalterably change -especially if it becomes clear that recovery may be limited. A spouse may no longer be able to work, to walk, to maintain the same kind of sexual relationship they previously had. A child may have to play the role of parent, suddenly responsible for care that may anger or embarrass their loved one. How are caregivers and their care recipients supposed to handle these changes?
Considering the vast changes a stroke may bring about in someone's life, it's not surprising that negative emotions are a common side-effect. Feeling sad about lost abilities is a normal part - and perhaps a necessary part - of learning to accept the adjustments the stroke has forced you to make.
Common emotional side-effects for stroke sufferers:
- Emotional Lability (sudden laughing or crying with no apparent cause)
- Grief at the loss of ability
- Memory loss
One common result of stroke, which may be both physiological and psychological, is emotional lability, where people have sudden outbursts of crying or laughing, often without any apparent cause. As well, these episodes often end as quickly as they start, leaving many stroke sufferers and their caregivers confused and upset. Luckily, this symptom will either disappear or lessen with time.
Caregivers and care recipients will also share many of the same feelings, like fear of another stroke, or anxiety about the future in general. Although these negative emotions may seem overwhelming at first, recognize that many of them are temporary. To help alleviate some of these feelings, consider joining a support group where you and your care recipient can speak to other stroke sufferers and their caregivers.
Still, caregivers need to carefully monitor their loved one and watch for depression. Temporary grief and sadness is normal, but chronic depression is a source for concern. If you or your care recipient experience chronic depression, or find anxiety an ever-present problem, don't hesitate to seek help. Remember that your mental state has a considerable effect on your physical well-being. These conditions are highly treatable, and your doctor will have a variety of options to offer.
Even if the problem is less serious, state of mind is important. If your care recipient is disheartened and unmotivated to participate in therapy, in exercise, or even in talking with friends and family, they are much more likely to worsen. Try to gently encourage your loved one, providing them the emotional support they need, and remind them that many stroke survivors have great improvement in many abilities beginning with the first weeks after stroke and up to two years after.
In addition, keeping active with community and with friends can be an important part of emotional recovery. If the care recipient is unable to carry on with past interests and hobbies, try to find new ones. Perhaps gardening, or card playing, or volunteering at church or for your local stroke chapter. Disabled individuals often benefit from as much independence as possible, so try not to over-protect your loved one. They still may be able to drive, or to return to work after retraining, as state-run programs can help disabled people find work.
Common emotional side-effects for caregivers:
- Depression and anxiety
Even if you are the primary caregiver, your family and friends need to understand that their support is needed - and part of that means supporting you. Your ability to care for your loved one is dependent upon your well-being. You need many of the same things that your care recipient needs:
- Affection and love
- Emotional support
- 'Away' time
- Exercise and a healthy diet
- Proper rest
- Relaxation time
How do you manage all this? Creating a care plan can help.
Changing Roles and Assigning Duties
Part of what makes the adjustment to a disability so difficult is the disarray it throws your life into. All of a sudden the old rules don't work anymore, and new ones need to be drawn out. This can be an extremely frustrating time, particularly for the care recipient and their caregivers. You can minimize these frustrations by drawing up a care plan.
Every family tends to have 'tried and true' ways of making decisions. Family members may also have 'roles' that give them certain duties and responsibilities. If a family member becomes disabled, one person may immediately assume the role of primary caregiver, whether the arrangement is implicit or explicit. Because the responsibility of a primary caregiver is so great, and so important, it is best to sit down as a group and openly discuss the care of your loved one. Rather than anticipating help from people, who may or may not be aware of what is expected of them, having everyone come together and talk about what needs to be done can help prevent family conflicts. Family members can also use this time to talk about their own feelings.
When holding the family meeting or conference, the different responsibilities for your loved one's care can be assigned to everyone who is able and willing. No one should be forced to accept a role unwillingly - particularly the role of primary caregiver. Perhaps one family member can be responsible for finances, another for transportation, another for housing. A back-up plan in the case of respite care, changing needs or an emergency should also be discussed. And be flexible. If the initial plan doesn't work out, hold another meeting and try to sort out the problems. Some decisions won't be easy, but working together as a family is the best solution.
If the loved one has to move in with family members, the changes that this will cause in the household need to be discussed frankly. The family may have less time for leisure and privacy. Children may also be confused by the new addition to their home. Still, if you explain the situation to children and offer ways for them to help, they may volunteer to help with certain duties, like cleaning, preparing dinner or spending time with your care recipient.
Even if one person accepts the role of primary caregiver, a role that may include housing and daily care activities, they should be able to ask for significant help from other family members. The primary caregiver will also need regular breaks from time to time, including longer 'vacations'. Other family or friends can take over care temporarily, or perhaps the care recipient can stay in a nursing home for a week or two. As well, most states have government-run programs that offer respite services.
If your family has trouble discussing these matters, you might enlist the help of a medical social worker in organizing care. Clergy members, support group members and counselors may also be able to offer advice. You can also call the Stroke Family Support Network, supported by the American Stroke Association, at 1-888-4-STROKE.
On a More Personal Level
Inter-personal relationships may also inevitably change as a result of the stroke. Your parent may resent your 'patronizing' behavior, or may be embarrassed by daily care duties like incontinence care. Or perhaps a spouse is concerned about their ability to perform sexually, or doesn't feel 'sexy' with their new disability. These can be extremely embarrassing and uncomfortable situations. Again, these are issues that might be helped by open discussion, with a clear understanding of what is and what isn't under your control. Still, outside counseling, particularly by aging care specialists and sex therapists, may be what is needed. You might also consider some daily or occasional outpatient care for your loved one, in which tasks such as changing and bathing are taken care of by a professional. Try not to 'baby' your care recipient, as this may only increase their feelings of humiliation. Let them maintain as much independence as possible, so as to help them retain their dignity. Resuming sexual activities after a stroke may require some changes to position and technique. And be sure to discuss sexual performance problems with a doctor, as medications for erectile difficulties and lubrication for problems with dryness can also help immensely. Alternatives to intercourse can also be highly fulfilling, such as massaging, touching, hugging and kissing.
Once care recipients have allowed themselves to mourn what has been lost, they will have the opportunity to rediscover enjoyment of many activities. Rather than focusing on 'recovery' as the re-gaining of past abilities - which may simply be impossible - one can instead view it as another kind of recovery, a transformative one, in which the care recipient discovers new interests, new methods of communicating and showing love, new ways of enjoying life. You, the caregiver, will have to go through this transformation as well, and it won't always be easy. But as many caregivers have expressed, both professional and at-home, it can be an incredibly enriching experience. Not all change is bad.
Author: Stephanie Davis
Stroke: Recovery - Mayo Foundation for Medical Education and Research.
Stroke: Emotional Response to Stroke - Mayo Foundation for Medical Education and Research.
Stroke: Impact of Stroke on Family - Mayo Foundation for Medical Education and Research.
Life at Home: Survivors & Family - National Stroke Association
Recovery & Rehabilitation - National Stroke Association
When you need a break - American Stroke Association
Taking care of yourself - American Stroke Association
You, your family and disability - American Stroke Association
Understanding Stroke: Implications for Caregiving - The Council Close-Up, September 22, 1995, Number 126. Illinois Council on Long Term Care
Adjusting to Stroke - Caregiver-Information.com