Any kind of parkinsonian disease has well recognized effects on the caregiver, who usually places the needs of the chronically ill person before his/her own needs. Tiredness and tension due to stress and lack of sleep are common. Because of this, people with these diseases have broken sleep patterns, and care partners tend to be light sleepers. There is an ever present fear that a person being cared for may fall in the darkened bedroom as he/she shuffles slowly across the floor with an uneven gait, either going to the bathroom or moving around to ease muscle rigidity.
The tension of 24-hour, seven-day week duty without respite is completely draining. Caregivers need off duty time - it is unrealistic to assume otherwise. Sleep deprivation and daily stress will cause a change in disposition and even the calmest people will become irritable and have angry outbursts. This is perfectly normal.
Anger is a normal reaction to a tense situation over which you have no control. Sometimes we lash out at the person who is nearest and dearest to us and then we are horrified by our lack of control. Words spewed forth in anger can hurt as much as a physical blow. Be angry at the illness - not yourself or your partner. Learn how to deal with anger constructively.
It is normal for the carer to feel resentment at times toward his/her mate because of the changes in their lifestyle. Other negative feelings such as guilt, disappointment, or sadness may also be experienced. The caregiver is often frustrated by feelings of isolation. Unfair as it is, some friends slowly drop away.
Stop and think!
At times, the caregiver may be overwhelmed by all the responsibilities that must be shouldered. As a caregiver, it helps if you can identify the symptoms of your stress. In the first place, do not try to achieve too much. Although you may initially set yourself the target of being an ever-present helpmate and protector, this is a physical and emotional impossibility.
Seek professional help when you feel your world is falling apart. Speak with your spiritual mentor, social worker, psychologist, psychiatrist or counsellor.
You could also try joining a support group. There, you will be encouraged to discuss honestly your frustrations and fears with other caregivers facing similar challenges. Once you have established that your challenges are no different from those faced by others, you will be able return to your spouse with renewed courage.
Sometimes, caregivers develop a martyr complex. They try to anticipate their partner's need and step in to assist the patient before help is actually needed. They expend too much energy worrying about what might happen. There is time enough to do something about it when and if something actually happens. Most of the things we worry about never turn out as bad as we fear they might be, so why borrow trouble?
You should realize that you must take good care of your own physical and emotional needs. You cannot put everyone's need before your own. The hard truth is that if you are ill or unable to cope, the care recipient will also have a more difficult time. Caregiver burn-out is serious.
For caregivers, good health is very important. Exercise, eat balanced meals at regular times. Socialize and make time for your own needs. Take a short walk each day, and make it a time for personal thoughts, for plans, for renewing your energy level. Get into a routine even if you only devote 15 or 20 minutes a day to some form of exercise. If you can not leave the house, lie on the floor in front of the TV and exercise. Do leg lifts. Stretch. Breath deeply. Keep your body in good condition.
Many harried caregivers skip meals or eat on the run. Sit at the table and enjoy conversation with your partner. Select a quiet time while your partner is busy and go into the kitchen for a healthful snack or a cup of tea. Good nutrition will increase your energy levels.
