1st March, 2002
CARE RECEIVING IS A WAY of life for those who are unable to independently perform the activities of daily living (ADLs). These include eating, bathing, dressing, mobility, using the toilet, and cognition.
Receiving care in an individual's own home requires a dedicated commitment from the care receiver as well as family and friends, as the learning curve at the onset of receiving long-term care is steep. Because the needs of the care receivers vary widely, the plans for meeting them must vary as well. Care receivers need to be able to ask for the help that they need and adjust to the feeling of dependence that the request may bring. It's important that this adjustment be made before it interferes with the quality of care given.
A Difficult Adjustment
I have primary progressive MS and have been receiving care in my own home for the past 8 years. I'm a functional quadriplegic and am dependent on others in all of the ADLs. Because of the extent of my disability, I require assistance for most of the day, and depend on Medicaid-funded caregivers. I started receiving overnight care rather suddenly, after an illness left me unable to live independently. I had a difficult time coping with the new sense of dependence, lack of privacy, loss of ability to participate in activities, and a general sense of depression. I believe this. made it very difficult for caregivers to do their job and reduced their satisfaction of working with me. I unconsciously began a long process of adapting to my new life. The end result was my becoming a better care receiver, which made it possible for me to receive better care.
I first found it necessary to accept the help that I needed and ask for additional help when that assistance was not offered. I then needed to find a manner in which I felt I was making a contribution to society.
Keeping my old friends and making new ones was also important to me. Setting up a network of caregivers and friends that can help when needed is key to my continuity of care. Most of my learning was through trial and error, so I didn't take a logical approach in establishing priorities. At first I was attempting to take care of problems when they occurred; once my situation became more secure, I was able to do some planning.
Keeping my health as stable as possible is my first priority; if it's not, it becomes very difficult to do anything else. My first step was to establish a network of health professionals and caregivers. My first attempts were rather clumsy, but fortunately I was connected with a home health care agency and the staff there helped to ease the transition.
I didn't have a general physician, which became necessary. I was aided by the home health care agency in locating a very good primary care physician, who helps me gain access to specialists when I need them. I also needed to set up a relationship with my case manager at Disability Services. My medical card, food stamps, and personal care would all be coordinated through that person.
The more important step was to establish a network of caregivers and a style of care receiving that fit my personality but was conducive to receiving good care. I am still working on and improving this today. My reluctance to accept care in the beginning helped to make caregiver turnover a frequent occurrence. Once I started to gain recognition of the value of caregivers in my life, I began to make an attempt to soften my care-receiving style. Much of this has occurred unconsciously. I have found that I can maintain my personality and receive care in a manner that is conducive to good care.
The Importance of Self-esteem
I also have to take care of myself mentally, which I believe is the most difficult and timeconsuming element of care receiving. I think that probably the most critical component is to maintain self-esteem. I must try to retain a positive image of myself in spite of dependence, lengthy daily routines to accomplish simple tasks, and a total loss of physical privacy.
I have found that one way to accomplish this is to search out methods in which I can feel I am making a contribution to society. I am now a powerful advocate for people with disabilities. This takes a lot of effort but also motivates me to keep a positive view of myself. Another factor is maintaining my network of family and friends.
Although no members of my family are living nearby, they have provided support throughout my life. I also have some good friends who are integral to helping me keep in touch with society.
Another element of maintaining my self-- esteem is to differentiate between physical privacy and mental privacy. I think it is crucial for me to let go of previous thoughts concerning the importance of physical privacy while establishing the importance of mental privacy. This allows me to maintain a sense of myself.
Becoming a better care receiver is not unlike any other major change
in life. The basic elements are attempting to maintain the better parts
of the past while looking to the future and seeking out possible improvements.
The simple philosophy of doing the best that I can with what I have has
served me well.
(C) 2002 Real Living with Multiple Sclerosis