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Parkinson's disease Caregiver Commentary

Caregiver's Bill of Rights
By Susan Hamburger

Last month, I incorporated the "Caregiver's Bible" into my column. This month I'd like to take a look at the "Caregiver's Bill of Rights," whose author is also unknown, but has also been in many caregiver publications. I though it might be helpful to go over each point and add some of my thoughts and the actions that I have found helpful.

I have the right...

...to take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.

– To give myself a better perspective on the daily demands of dealing with Parkinson's disease, I know that it is necessary for me to have frequent breaks. I have hired Whittley to come in four days a week for 4 hours. Without the breaks that this affords me, I know that I would not be able to deal with everything as well. I also try to get exercise at least three times a week - going for walks, attending aerobics classes, yoga, walking stairs instead of using an elevator, etc. Getting yearly physicals and staying on top of all health problems are vitally important for each of us. We are better caregivers if we are healthy and able to keep up with what needs to be done.

...to maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.

– Because I have Whittley, I am able to go out or stay home, essentially doing what I want and/or need to do at those times, so I feel that I have some semblance of a normal life. Occasionally I meet a friend for some "girl" stuff, but usually I do errands or work around our house. My aerobics and yoga classes are nearby and Stan is able to be alone at those times. Most of my outside activities involve my significant involvement and work with our local PD Chapter, and I often take Stan with me. In any way that we can, we need to make happen that which allows us to feel that we "have a life". Without it we are vulnerable to feeling angry, depressed and bitter much of the time.

...to get angry, be depressed, and express other difficult feelings occasionally

– There are many moments, sometimes daily, of feeling angry, frustrated, helpless and/or depressed. Fortunately they are usually short lived because I am able to acknowledge them, not always to Stan, but at least to myself. I try to figure out why I reacted the way that I did, see that it was or was not probably warranted at the moment, and then try to move on. It's really important to be able to get past these moments or we would be angry all the time. Not that we don't have reason to be, but it doesn't feel good and is not helpful to our family member or ourselves.

...to reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt and/or depression.

– I have to work hard at not letting this happen to me because it is difficult. I think we need to decide what it is that we need in our lives, whether it is free time, exercise, time with friends, etc and then find a way to accomplish that. If our family member attempts to make us feel guilty, we need to be determined and know what we have to do. They will survive and we will be better for it.

...to receive consideration, affection, forgiveness, and acceptance for what I do, from my loved one for as long as I offer these qualities in return.

– I have found the best way to make this happen, if you basically love each other, is through frequent honest communication about how you each feel about what is happening. It may mean apologizing for an action, or explaining how frustrating something is, or how you can't deal with something right now, or any number of things that might create a problem if left unexplained.

...to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

– In other words, we should be aware of the job we are doing and feel good about it. Not many people are able to carry the heavy burdens that we have. Remember, life is not for the faint-hearted. It's tough sometimes but we are up to the challenge.

...to protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

– I have tried to maintain my friendships and contacts with other people so if at any time I am alone, I will be able to carry on and not have to learn how to live a "normal" life again. Keep up with friends, hobbies, and all activities that you enjoy. Rituals and traditions are important for you, friends, and family to maintain.

...to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

– Hopefully this might be beginning to happen now. I have seen several articles recently which have referred to "National Caregiver's Month," concern for the increasing numbers of caregivers in our country, the newly organized "Caregiver's Advisory Panel," etc. Maybe it would be helpful to suggest that your support groups have programs for and about caregivers.

About the Author
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master's Degrees, in Educational Psychology and Biostatistics/ Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Biostatistician at the National Institute of Mental Health.

Susan has served on the Board of local Parkinson's disease support group organizations since the early 1990's. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the Amercican Parkinson's Disease Association and the National Parkinson's Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson's disease research.

Susan has also been caregiver to her husband Stan, diagnosed with Parkinson's disease in 1980 and passed away on August 12, 2008 at the age of 73.


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