Lisette Bunting, R.N., M.Sc.N., Stephen G. Reich, M.D.
Young patients with Parkinson's disease have chosen to define the people who provide them with care as "carepartners" rather than "caregivers". The term "carepartner" is somehow more appropriate for the stage of life that is experienced by young patients with PD. Typically this group of patients continues to participate in activities of daily life, such as raising children, holding jobs and managing personal care. Thus a partnership of care better suits the needs of young PD patients.
Webster's dictionary defines a partner as "one of two or more persons who play together in a game against an opposing side ... a member of a partnership". Parkinson's disease can be viewed as the opposing team. However, the daily struggle in a care partnership is never recreational. Most carepartners are spouses, though for the young-onset patient a carepartner could be a parent, sibling, or possibly, a child. In some instances, even lovers, friends, or neighbors may become carepartners. Fully 1/3 of all carepartners are employed outside the home and have parental responsibilities as well.
A carepartner learns about and participates in the management of PD, along with the young Parkinson patient. The role of carepartner is often fulfilling, with a special joy and satisfaction found in providing support and help to someone you love dearly. If you are a carepartner, take pride in your role and your accomplishments. But recognize, too, that frustrations will occur and that your role can be quite taxing. Just as the patient has been forced to set new goals and expectations, based on the degree of limitation imposed by PD, the carepartner, too, is forced to reevaluate his/her own life plan, desires and hopes.
The Emotional Roller Coaster
If you are the spouse of a Parkinson's patient, you'll play a very major part in helping your stricken spouse and other members of the family learn to cope with PD and its fluctuating symptoms. You'll probably be trying to lift your Parkinsonian spouse's spirits, focusing on all the positives of his or her current condition, as well as on the exciting and very hopeful research going on today. You'll be doing much the same with your spouse's parents and siblings and with your own. You'll be trying, too, to help your children understand the illness and what it means. Probably almost daily, if those children live at home. You'll be providing at least some degree of physical support to your spouse; you may take over some of his or her household responsibilities and you may still hold down an outside job.
Meanwhile, the most well-meaning family members and friends begin each call or visit with, "How is John (or Mary) feeling?" They may seem to completely overlook the fact that your life has been disrupted, too; that you may be worn down to within an inch of your endurance. These people really do mean well. Their intentions are pure, but their vision can be clouded.
When questions like this one arise, for your own well-being, learn to counter them by talking about you both: your spouse's physical and emotional state and yours. Consider a response like, "Steve is doing pretty well today, but he had an awful time last night. We were both awake from about 3:00 a.m. on ... so forgive me if I'm a little out of sorts today. I'm simply very tired." Remember, your feelings are important, too. They deserve acknowledgment and respect.
The emotional roller coaster of dealing with PD can be exhausting. It can lead carepartners through feelings of anger, frustration, guilt, and loneliness. Each carepartner will experience his/her own sense of loss and grief over broken dreams.
Anger is a very common emotion for carepartners. They often express feeling cheated and angry with the diagnosis of PD. Suddenly having to plan for a life which includes accommodating a disability ... while still raising a family, managing a career and planning for retirement, certainly was not in the original equation. Anger can either become a very destructive and dividing force in the care partnership or it can motivate the partners to form a stronger bond, as together they face the long-term struggle with disease progression, treatment and care.
Frustration with the unpredictable aspects of PD can be a burden to a care partnership. The constant need for medication and the unpredictable response to therapy can make planning a daily routine an arduous task. In addition, the anticipation of what may lie ahead (what sacrifices and adjustments may be necessary to cope with the progression of the disease) does not exactly promote a sense of future security. However, it is important to remember that each case of PD is different. For young-onset patients in particular, the progression of the disease is generally quite slow. The majority of young patients will be able to function with only some limitations and most daily plans can be adjusted, if necessary, for times when medication is working.
Guilt often surfaces for the carepartner who feels he or she is not doing enough or not giving enough emotional support. Open expressions of anger, or even just feeling angry, can also lead to feelings of guilt. Carepartners are very good at feeling guilty. It often helps if they are able to recognize that usually they are doing the best they can, and if they can learn not to be too hard on themselves when they fall short of their expectations. After all, no one is perfect! Remember, too, expressing anger is healthy, as long as the carepartner recognizes that he or she is just angry with the situation and not with the person with PD. If you, as a carepartner are feeling this kind of anger, let the patient know your anger is not directed at him or her. You will avoid a lot of misunderstanding and hard feelings. You will undoubtedly hear this many times, but keeping the lines of communication open and talking to each other about feelings can be one of the best things both carepartners and patients can do for each other.
Loneliness may be one of the most intense feelings experienced by carepartners. PD tends to create barriers which can complicate social engagements, friendships and family ties. As a result, the young Parkinson patient may be reluctant to socialize and invitations to parties are turned down. Friends may be less likely to visit and family ties may become difficult to maintain. Both patient and carepartner are at risk of becoming isolated and lonely. Sometimes, the carepartner becomes nearly the patient's only social contact. The carepartner in this situation can begin to feel "trapped". He or she needs other social contact to help maintain a healthy outlook on life and to be more supportive of the patient. Making time to visit with friends, socializing with coworkers, and keeping in touch with family members can all help to minimize feelings of isolation and loneliness.
Providing Physical Support
Trying to maintain a job, care for a home, raise children, and assist a young patient with PD can lead to physical as well as emotional exhaustion, especially for the carepartner who adopts the attitude, "I'm the healthy one ... I should do it all." Such a carepartner often makes the mistake of trying to do everything for the patient which not only further exhausts the carepartner, but also undermines the independence and self-esteem of the patient. That's not healthy for you or for the patient, but where do you draw the line? What should you do? What should you not do?
Remember, first, that "use it or lose it" is very real. The more you do for your spouse (or child, sibling or parent) the less he or she will be able to do for him/herself. If you do "too much" you'll create a kind of "learned helplessness" that becomes circular in nature. The patient will experience an increasing loss of self-esteem and begin to believe that he or she is capable of very little. That, in turn, results in more demands on you for help. You'll end up doing more and more for your afflicted loved one, with less and less time to meet your personal needs. You'll be frustrated; you may be angry. Your afflicted loved one, meanwhile, can spiral downward into lower self esteem and guilt.
So how do you decide how much the Parkinsonian you love can do for him/herself? Not easy. Sometimes you can simply rely on your loved one to tell you what he or she can do. Most of the time, if the Parkinsonian wants to do something on their own ... let them!
Other times, however, depression may keep your loved one from wanting to try something he or she could do. Then, too, there may be times your loved one will overestimate his/her capabilities and safety is at risk.
Force yourself to pause before you leap to help your loved one. Emotionally, that's hard; you want to help. But take the time to evaluate, as objectively as you can, the task at hand against your loved one's capacity to perform it. If you are not sure, do it this time ... then call the doctor or physical therapist and ask for their advice. Too, you're a carePARTNER. Talk to your loved one; you're in a partnership. Set the stage for the two of you to discuss and decide together where and when your help is really needed and when it's actually interfering with his or her independence. If he or she is unwilling to do something you know is possible, it's "tough love" time. For example, when your afflicted loved one is sitting on a couch with you along side, also seated, and you're asked for a glass of water, reply with careful phrasing, "Honey, you know I'd really like to just do it. But that's honestly not good for you. Why don't you try to get it yourself. If you have trouble, I'm right here!"
The single best thing you can do to help your Parkinsonian loved one is not to help him or her all the time. Encourage independence whenever you can. It's good for your loved one ... and it's good for you. Of course there are times and situations when your help will be needed. Sometimes patients need help with things like just turning over in bed or standing up. You will want to help, but be sure to learn how to give this needed help in such a way that you don't end up straining your back or otherwise injuring yourself. A physical therapist, or even a nurse, can usually show you the right way to give this assistance.
Encouraging your loved one to be as active as possible is especially important for young-onset patients. Then, too, you need to remain active to maintain your health. The importance of exercise, sunshine and fresh air can't be over-emphasized. Again, it's a partnership. As long as the disease allows, do things together for exercise and pleasure. Jog. Take hikes. Do some long-distance skiing. Swim, take a yoga class, and/or work out at the gym. Play golf or tennis. Later, if activities like these become too demanding, take walks together. Get a PD Physical Therapy tape or visit a Physical Therapist to obtain an exercise program - and do the exercises together. They will benefit you as well as your Parkinsonian loved one.
Don't answer questions directed to your loved one. He or she may be slow in responding, voice projection may be affected, but allow - even URGE - him or her to take part in conversations. If you answer for your loved one, he or she will begin to tune out of conversations, feeling unneeded and unwanted by all concerned.
If your loved one needs assistance with the activities of daily living, there are numerous useful aids and adaptive devices available to use in the home which can increase independence and safety. The APDA's booklet "Be Independent" (available from your local APDA Information & Referral Center or the APDA National Office) lists many worthwhile ideas, such as grab bars for the bathroom, special handles for toothbrushes and hairbrushes, velcro closures for clothing, etc. There are even suggestions for creating your own aids from familiar items you probably already have on hand, like a nail hammered into a board to skewer food for dicing, or toast for buttering. You can also contact an occupational therapist to come to your home, evaluate needs and make suggestions. This professionally trained and objective individual can be of great help in spotting problem areas and assisting with solutions.
Caring For Yourself
Some of the emotional strain of the care partnership is normal and expected. Again, open communication between the partners is absolutely essential for the relationship to adapt and change as the disease progresses. An open and honest expression of feelings and concerns will enhance the relationship and provide strength during difficult times. Using some of the techniques taught in assertiveness training classes will help to express your feelings and needs in a constructive and non-threatening way. Using "I" statements such as those listed below can help you to take control of a situation and feel good about how you are communicating your feelings:
I can allow others to find solutions for their own problems and not feel guilty about not finding solutions for them.
I can change my mind.
I can say, "I don't understand," rather than pretend that I do.
I can accept that some people will like me and approve of what I do and others will not.
If you find that communication between you and your Parkinsonian loved one is breaking down in spite of your best efforts - or that emotional problems have become overwhelming, you may need to seek professional help. If necessary, don't hesitate to find a psychotherapist - even if you think you can't afford one. Most psychotherapists have sliding payment scales and will work with you to help make their services affordable.
Carepartners are extremely good at meeting the need of others and losing a sense of self. Taking care of yourself and your own health is essential. After all, you can't be much help to your loved one if you're not in good health yourself. Most of the following suggestions for carepartners were prepared at Texas Tech University Health Science Center and appear in the APDA's booklet "Coping with Parkinson's Disease"
For both you and your Parkinsonian loved one, learn all you can about PD. Knowledge is empowering. By learning as much as you can, you will find that both you and the patient will cope better.
Also, find out about support groups in your area and make the effort to attend. Support groups offer a lot of information - the latest in research and treatment, along with all kinds of coping suggestions and ideas shared by members. Most groups also have speakers on a regular basis - everything from neurologists, speech therapists and physical therapists to experts on social security, insurance and estate planning. You will not only learn a lot, but you will make some wonderful new friends, as well.
Both support groups and books can be outstanding sources of strength and encouragement. Specifically for young patients and their families, the APDA's Young Parkinson's Support Network offers some wonderful support groups, PD literature, newsletters, a computer network, and help of all kinds for carepartners, children and family members of young PD patients. Joining the Young Parkinson's Support Network will help both carepartners and young patients to know they are not alone.
Can a Care Partnership Survive?
Yes, a care partnership can survive and thrive. Both partners need to realize that some "negative" emotional responses are part of the normal aspects of caring. Both should be willing to express feelings and needs with their medical team. Physicians, nurses and social workers can provide much emotional support and offer resources to help cope with the daily frustrations of PD.
Remember, too, focusing on the positive aspects of the care partnership will help to keep the act of caring one of love and devotion, and will greatly reduce the chance of its turning into a burden and a chore.
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