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“My Life With Personal Care Attendants”

By Jean Mankowsky-Upham

I was eight years old before Rheumatoid Arthritis became a factor in my daily life and nineteen before the disease had progressed to the point where I was no longer able to dress, bathe, toilet, or even feed myself independently. The intervening eleven years were not without their challenges as I tried multiple pharmaceutical treatments, dozens of hospitalizations, numerous surgical procedures, and uncounted hours of physical and occupational therapy. But throughout this time I was always able to take care of my most personal needs, something that most people take completely for granted!

When I was nineteen I found myself suddenly reduced to a level of physical dependence that I had not experienced since I was a toddler. It didn’t happen overnight, as in the case of an accident resulting in a spinal cord injury, but over a period of months while a severe “flare-up” attacked every joint in my body, causing severe pain and the relentless destruction of all my physical abilities. But whether one comes to the point of needing physical assistance with personal care suddenly, or over a period of months or years, it changes profoundly and permanently the way one looks at the world, at one’s life, and at oneself!

I am grateful for the years when I was able to do all my own personal care, not because it somehow made it easier for me to accept help when I needed it from others, but because it gave me the opportunity to experience life from both perspectives. I can remember waking in the morning and suddenly remembering something I was very excited about doing that day. I remember ‘jumping out of bed’ and ‘throwing on my clothes’, ‘grabbing a quick bite of breakfast.’ brushing my teeth, combing my hair, and I was “good to go”; ready and raring to go for that bike ride, or to go skating, or to head off to dance class! Likewise, I remember being so tired at the end of the day that I couldn’t ‘fall into bed’ fast enough! I’d do a quick wash up, a once over on my teeth, toss my clothes in the chair, slip on my nightie, and I was off to dreamland! It amazes me even today to think that this is the way most people experience their lives; minute to minute, spontaneously, with little or no planning or scheduling for the basic necessities of life. This is in stark contrast to requiring a personal care attendant to do all these little, but absolutely essential, unavoidable acts of living!

When one needs another person for all these basic acts of survival, simple acts of being alive, it necessitates a life of deliberation, of planning, scheduling, and, yes, quite a bit of waiting. It also requires a different level of relationship with other people. It means having to take others’ feelings, wants, needs, and moods into account at all times. Needing an attendant means not being able to blow off the rest of the world for an hour or a day or longer, even if that is precisely what you would like to do at the moment, because at the next moment your bladder may need immediate attention, your stomach may give a warning growl, or it may be time for your next dose of medication.

Needing the assistance of another, or others, with all the little acts that make up “Life,” like getting out of bed, toileting (in whatever format that means for you depending on the condition of your bodily functions), washing, showering, or bathing, grooming, dressing, and other less intimate, but equally important acts like eating, taking medication, and doing exercises, means a level of planning, cooperation, and communication that equals or exceeds that of many successful and complex businesses! It requires something very special from both the person needing and the person providing the personal care. Both parties have a relationship with each other which is deeper and more profound than many marriages or long-time friendships. The relationship involves not only seeing each other in good and bad times, but working together through whatever the momentary feeling or urge may be.

It requires a deep level of trust by the person needing assistance; not only trusting that one not be dropped during a transferor hurt more than necessary while dressing or being moved, but also trusting that the caregiver who sees one in their most personal, intimate, and vulnerable moments, treat one with respect and care. It also requires a great deal of patience and tolerance on the part of both care ‘giver’ and ‘receiver,’ as neither one is a robot and both have feelings, and wants, and preferences, and needs!

Over the past 35 years while I have needed personal care services, I have had this need met by numerous individuals. Most of them have been family or friends, but even the ones who started out as strangers, quickly became friends. I think this is inevitable because I can’t imagine living so closely and on such a personal level with someone without forming a close bond. Having an attendant who either lives in your home or who comes into your home on a regular basis, is different than having a nurse or nurse’s aide care for you in a hospital or nursing home. Coming into your home, being involved in all aspects of your life, and interacting with other members of your household, changes the dynamics greatly and makes it necessary to find attendants who “fit” into your lifestyle and who are comfortable with your values and ways of doing things, and vice versa!

There are many hints on ways to find attendants, as well as with training, negotiating responsibilities and scheduling. In all of these areas, good communication is the key element. The information presented in these resources, in this Attendant Care Toolkit, will offer many techniques and ideas for you to consider and try if they seem appropriate to you and your situation. The most important thing I can say is to remember that any good relationship takes ongoing work and attention! Good marriages and good friendships do not just “happen.” They become good relationships through deliberate, ongoing attention. Through not only listening to the other person, but really hearing what they have to say! It happens through tolerance and compromise, and a whole lot of give and take on the part of both care giver and receiver. But the result is worth all the effort because what one ends up with is a multi-dimensional, mutually supportive relationship for all parties. Having strong, supportive relationships with my attendants has made it possible for me to maintain my level of independence, to feel secure in my personal life, to stay in my home with my family and pets, and remain a contributing member of my community, state, and world!

So, take the challenge and create a personal care support system in your life which will allow you to be as independent and involved in your world as you choose! And although it is not an easy challenge, it can create a depth of relationships with your fellow travelers on this beautiful earth, a pattern of love and care and interdependency, to last throughout your life!