Judy: 1, n.

2). My catheter changing routine at home is identical to that used in any hospital, that is, sterile. For this we provide the nurse with a commercially prepared sterile kit containing gloves, drape, lubricant, cleansing solution, cotton balls, sterile water and syringe, along with a new catheter and drainage bag. Needless to say, care is taken to prevent damaging the wrapping of these kits. We keep a supply of both kits and catheters on hand in case the new catheter inadvertently becomes contaminated during insertion.
3). Because my legs must be moved for therapy and sitting, we have devised a way of taping the catheter securely, which allows freedom of movement and yet puts no stress on my urethra. Rather than plastering the catheter immovably to my leg, we use the following procedure:

Judy: 1, m.

3. Miscellaneous
a. Foley Catheter
1. During the past several years we have used a variety of catheters and procedures for their care. I will try to explain how we have progressed through these various stages:
a. 1968 - used latex catheter with added opening to allow for insertion of continuous antibiotic irrigation (saline plus neosporin).
b. 1969 - used normal latex catheter, which we irrigated manually with a sterile water solution. Thankfully, this procedure was discontinued immediately upon discovery that it was causing bladder spasms which were refluxing bacteria-laden urine toward my kidneys. As I regularly drink 5000 cc. daily of any non-alcoholic liquid, it was felt that this internal irrigation was every bit as effective and for me, less dangerous than the manual irrigation.
c. 1970 - changed to the then new type Foley Silastic catheter. This is a latex catheter coated with a layer of silicon which is intended to reduce the body's normal rejection mechanism.
d. 1972 - changed to an all Silicon catheter, which claims an even longer life with far less sediment build-up and irritation than even the previous Silastic type.

Judy: 1, l.

1.) An alternative to doing this during the morning routine, s to insert the suppository upon retiring in the evening. Action takes place while patient sleeps on side with Chux strategically placed and can be tied up before turning. (Night time turning will be described in Part IV.)
g. Begin bathing this day from the rear (rolling out soiled Chux), then front - following with particular care the rule of never returning a soiled wash cloth to the bath pail. Scrupulous white glove treatment of all creases of the perineal area insures protection of the skin.
h. Sit up for remainder of bed bath or prepare for tub bath.
i. Dress, arrange Hoyer sling, etc. as described previously. (Because of the above mentioned bowel impaction, have found it better for me not to use the brace this day; therefore, rather than the wheelchair, the chaise lounge is brought into service.
* * * * *

Juldy: 1, k.

b. Insert Dulcolax suppository as first step in program, using a well lubricated rubber glove. (We wrap and save the glove for use later in this routine.)
c. Spread underpad (Chux). This is necessary in my case, as I cannot be placed on a bedpan or commode for a variety of reasons 0 the main one being to prevent undue prolonged pressure to critical spots on my skin.
d. Breakfast is fed to me this morning while I am still flat on my back. (Hot coffee stimulates action of the suppository.)
e. Range of motion exercises. These also aid action of the Dulcolax. (See Appendix III)
f. Finish program by using the well lubricated rubber glove for gentle stimulation of the rectum, which pretty well insures two day free from accidents. Using the middle finger for this procedure is also a good way of detecting an impaction. (An enameled porcelain container lined with paper towels is used for collecting refuse and toilet paper which is then flushed into toilet. Lysol is used liberally as a disinfectant during the process of cleaning up this container. Needless to say, all this involves much hand washing - we still use pHisohex.)

Judy:1, j.

2. Bowel Program Day - The aim of this day is to get me up and functioning in much the same manner as we previously described for a work day, but with some necessary variations in procedure as dictated by this day's priority - the bowel program.
a. Preparation for the success of this function has been incorporated into our daily life style, i.e., diet, medication, etc.
1. Medication - Uricoline (a smooth muscle relaxer) which was prescribed for me as a result of an earlier bowel impaction and Colace (a stool softener).
2. Large quantities of fluid - I drink approximately five quarts daily. This serves the dual purpose of thoroughly flushing the urinary system.
3. At least three servings of fruit and fruit juice daily - I prefer to use a small jar of strained baby fruit as one serving and dried apricots or my allowance of dried prunes as a second serving. Fruit or vegetable juice makes the third serving. (Appendix IV)
4. A salad or fresh vegetable is included in at least one meal daily for bulk.

Judy: 1, i

g. Begin dressing which includes:
1.) Surgical elastic stockings with flared thigh. (Mine are by Kenlon and are quite expensive, $35.00 a pair, but they last about a year.) Their function is to prevent blood from pooling in my feet and legs and to permit me the security of sitting with my feet lowered without fainting.
2.) Hoke Polio Sitting Corset with rigid metal uprights. This glamours looking garment of sturdy canvas is custom made with metal uprights shaped ot fit my spinal curves. Its purpose is to make breathing easier and to add stability to my sitting position in the wheelchair - I must sit at a slightly reclined angle.
3.) the remainder of dressing includes a bra, panties, dress, etc. (See Appendix V)
h. Even though most of the above procedure is accomplished with me in a prone position, it does not require as much brute strength as would seem likely. The necessary turning is done by using body leverage which enables the nurse to accomplish her tasks without undue tugging and pulling on my arms and legs.
i. Arrange the nylon Hoyer sling with patient carefully centered to insure a comfortable sitting position and proper balance. Time and practice in the use of the hoist gives confidence, but we usually have an extra person present for learners. Hurrah! Hours later, I am up in the wheelchair and ready to go.
* * * * *

Judy: 1, h.

e. Begin the bed bath, using he equipment previously described here - teacart, two-sided pail, etc. This portion of my bath includes face, hands, arms, abdomen, back and shoulders and is done while I am still in a sitting position. We rub Jean Nate liberally on my back and shoulders as a skin toner.
f. Lower the bed, change the water in the pail and begin the most important part of daily care - a thorough careful washing of the creases in the groin, vaginal and catheter areas. We use a procedure of gentle soaping, then several clear rinses, using thin wash cloths for both washing and drying. This delicate skin needs to be patted (not rubbed) thoroughly dry to keep it from deteriorating and sloughing away. The same process is following from the rear, including the back part of the catheter area. Once sure the folds of flesh are no longer damp, we use Desitin powder freely, being sure to protect the vaginal opening. (The reasoning behind using the thinner wash cloths, rather than a towel, is that they maneuver better in close quarters.) An alternative here, rather than the complete bed bath, is to get in to the bath tub after the catheter area has been cleaned.

Judy: 1, g

B. The actual morning's work breaks down into two distinct programs which occur on alternate days.
1. Work day - My goal on this day is to be mobile in my motorized wheelchair and usually this is a day when I go to work. To accomplish this we use a routine similar to the following:
a. Count the day's medication into individual pill cups to prevent any later mix-up.
b. Coat feet and ankles moderately with Dermassage, stroking (never messaging) lightly upwards from the toes to the calf. This is to keep the skin from drying or cracking as we do not bathe my feet and legs daily.
c. Do passive range of motion exercises on legs. (See Appendix III) The purpose of these is to keep my tendons and muscles limber, but they also have a very relaxing effect on my back and help to unwind any muscle tension that may have built up overnight.
d. Sit up in bed for breakfast, using a foam rubber wedge pillow behind my back. This upright position is a refreshing relief after lying down all night, but it also serves the purpose of stabilizing my blood pressure, as I am often quite dizzy when I first sit up. In this position, gravity allows me to feed myself from a bedside table which is placed in front of me. Feeding myself breakfast on this day is my only active participation in the entire morning's schedule. (See Appendix IV)

Judy 1, f.

8. Once finally out of bed, I sit on the flotation pad in a motorized wheelchair, which comes with its own battery charger - or - we have found a thick cushioned, outdoor type chaise lounge to be a comfortable alternative. This lends itself to being towed throughout the house or outdoors Incorporated in the lounge is a padded footboard to support my feet in an upright and flat position. Seated as usual on my flotation pad, I can relax snugly and work or read easily at a table which my father made to fit over the lounge. (When using this chaise, an additional wedge of foam rubber is abutted to the flotation pad to prevent shearing my skin.)
9. All of the preceding equipment, as well as any necessary supplies (extra pillows, sweaters, shoes, lingerie, shampoo, etc.) are contained within a combination laundry-storage room adjacent to my bedroom. We solved the problem of storage space by using shelves concealed behind white window shades, rather than expensive, cumbersome cabinets. My experience has been that a well organized storage space allows a new person to be introduced to our routine without undue confusion. This organization also extends to a file cabinet which contains most of my personal effects and projects, thus allowing me to direct someone else to locate any item easily.
* * * * *

Judy: 1, e.

c. Another possible addition to the tub is a contoured plastic or fiber-glass chair with suction cups to hold it in place. Personally, I prefer to sit on a folded bath towel with a second one folded and place behind my back.
d. To prevent the room from becoming hopelessly wet as I transfer in the lift from the tub, we have devised a very successful routine.
1). While I am being bathed, the bed linen is changed and covered completely with a large, flannel-lined plastic table cloth - flannel side up.
2). This in turn is covered with a large terry cloth beach towel. We made our own from three yards of 36" terry toweling.
3.) When I am ready to transfer back to bed, we re-attach and raise the lift and, while I am suspended over the tub, wrap a second beach towel around my back and seat. With all excess water blotted dry by the time I reach bed, the remaining process of rolling off the protective covering is neat and easy.
e. Extra shower rods over the tub for hanging the wet towels and sling complete t he entire set-up and a folding screen painted to match the walls hides it all form view when not in use. This screen also gives privacy by covering the doorway when I am in the tub.
f. An alternative to the bath tub, especially for a hospital or nursing home patient, is a ledge-less hospital type stall shower used with a special shower chair or a blanket covered hospital stretcher. I used this latter method like a "car wash" - feet end wheeled in first, then reverse for upper end and shampoo. After four months of nothing but bed baths, the running water felt marvelous!

Judy: 1, d.

7. Every third or fourth morning includes a trip into my bath tub in lieu of the bed bath. My father installed a small tub i my bedroom on an elevated platform. (See Appendix I, drawing 1). This enables the legs of the Hoyer Lifter, which I use to transfer from the bed into the tub, to glide smoothly under the tub allowing me to be lowered safely into it. (For safety and security, this should be a two person operation.) For this trip, I use a second Moyer sling, which we keep separate just for splashing days. Included in the tub are several extra features for both safety and comfort:
a. A grab bar on the wall, well within the reach of my are - and no-skid strips on the bottom of the tub (mine are adhesive backed rubber flowers), I feel are very necessary.
b. In place of the standard shower head, we ordered from Sear's catalogue an adjustable, hand-held shower head with a five foot long metal hose. This turns and sitting bath and shampoo into a shower and works just beautifully.

Judy: I, c.

c. Top sheets folded in half, rather than cut, and used double also help to eliminate bulk.
d. A huck drawn sheet fashioned from a two and one-half yard length of the toweling folding in half and stitched securely, makes minor adjustments in my position easier for the nurse.
6. Most mornings include a sponge bath in bed and for this we have found:
a. A two-sided plastic water pail works very well with one side used for soaping and the other side for clear rinsing.
b. During the past five years we have amassed quite a supply of bath linen, which includes more than sixty wash cloths and about a dozen each hand and bath towels. This is really not as extravagant as it seems, because a bad day can wipe out the entire supply. (A soiled wash cloth is never returned to the pail, to prevent contaminating the bath water. Pursuing this topic of contamination, any linen which is dropped or touches the e floor, goes directly into that day's laundry - unused.) Pillow case, bottom sheet and nightgown are all laundered daily along with each morning's accumulation of bath linen. A bacteriostatic fabric softener is always used in the laundry rinse water. All of this may seem over scrupulous, but it has proven effective in maintaining healthy skin.
7. A metal tea cart can be a great help in the daily bath, by wheeling bath water, soap, linen, powder, cologne, Dermassage, etc. right up to the bedside, so everything is within reach. Ours includes an electrical outlet into which a razor or other appliance may be plugged.

Judy: I, b..

4. Also in use daily is a Hoyer Lifter (Ted Hoyer & Co., Oshkosh, Wisc.), which enables one person to transfer almost anyone from a bed into a wheelchair, chaise lounge or bath tub and back again. A one piece nylon sling serves as a seat and remains under the patient during the day.
5. From daily use we have found:
a. Extra long (39" x 80") contour bottom sheets fit a hospital mattress much better than the regular ones.
b. Blankets cut in half width-wise and bound, cause much less bulk than whole ones, especially when the side rails are raised. To prevent my feet from pronating and to allow excess body heat to escape, we do not tuck the blankets at the bottom, but leave them free and folded back with most of the weight on my shins.

Judy: I, a.

Part I
9 A.M. to 1 P.M. - Morning Care
A. Since the entire morning's work is actually bedside care, I will begin with an inventory of all items involved:
1. A hospital type bed is a great help to the "nurse" for bedside care; bathing, dressing and physical therapy are all much easier when the "patient" is at a convenient height. My bed had full length guard rails on both sides, which make turning and lying on my side much safer. It also have a standard I.V. pole attached to the footboard from which we hang a string to suspend the catheter drainage bag below mattress level.
2. In addition to the regular mattress on the bed, I use an Alternating Pressure Pad Unit (Grant Airmass Corp., Vanderbilt, Mich.) to help prevent pressure sores.
3. Also for this purpose, I have a Stryker Flotation Pad (Stryker Corp., Kalamazoo, Mich.) and/or a Jobst Flotation Pad (Jobst Institute, Inc., Toledo, Ohio) which are both made of a jelly-like substance and used as a seat cushion in my wheelchair or chaise lounge by day and under my heels by night. Available in conjunction with either of these flotation pads is a foam leveling mattress, made to surround the pad on the bed. We have been pleased to have mine during electrical power failures, when the alternating air pad was not working.
(Note: Judy underlined the words that appear in italics above. As the computer doesn't seem to have an underlining capacity, I'll follow the italics mode throughout.)

Judy: Intro Continued

For want of a better way to present this information, I will describe a typical day's schedule, listing whatever seems appropriate, equipment, special details and our reasons for proceeding as we do. Although I know it need not be stressed, I should mention that all physical therapy, medications and diet restrictions have been suggested for my particular condition and should have a doctor's approval before being used in another case.
I am a twenty-eight year old, basically healthy, female quadriplegic. Since September 1967, when my spinal cord was crushed at the C-5,6 level, I have been paralyzed and without feeling from the shoulders down, which has necessitated the use of a Foley catheter and an organized bowel routine. To allow me to lead as normal and active a life as possible, our goal two days a week is preparing me to leave the house for several hours in the afternoon to work in the lab at Sacred Heart Hospital. Other afternoons are spent visiting with friends, either in person or by phone, shopping at our nearby mall, studying and preparing for work, dining out and keeping up with my correspondence and avocations.
In the interest of clarity, details will be presented in four segments:
Part I - 9 A.M. to 1 P.M. (Morning care)
Part II - 1 P.M. to 9 P.M. (Living)
Part III - 9 P.M. to 1 A.M. (Evening care)
Part IV - 1 A.M. to 9 A.M. (Sleeping and turning)
Judith Byrne
1819 Gravers Road
Norristown, Penna.
19401
(Note: I omitted the next page, as it is an index that repeats the section titles and seems unnecessary here.)

Judy: Introduction

These pages were not written with the intention of being a "How-to-do-it" for the handicapped, but merely to share with others the results of our endeavors. Professional aid and much family co-operation have made it possible for us to cope with the many problems of a quadriplegic living at home.
While I do not presume to tell the nurse how to do her work, I feel this is an area where a nurse's role as a teacher should be emphasized. She is needed to guide the patient and family through the awesome transition from hospital care, where all services are provided (diet kitchen, laundry, housekeeping , physical and occupational therapy, counseling and of course, nursing), to home care, where imagination and ingenuity are required to perform all these duties which now fall upon the untrained family.
Things that may seem logical and second nature in the areas of hygiene, skin care, organization and routine to someone with medical training, are a frightening mystery to the family newly accepting these responsibilities. It is my hope that you nurses might draw from our ideas, hopefully enlarge upon them and pass all or parts of them on to others who share problems similar to mine.

"The Handicapped At Home": Foreword

Foreword
After a year-long hiatus, I'm adding to "Uncle Frank's Farm" or "Domino Lane." (I honestly don't know the official name of this blog--but no matter.) Here's the reason:
I recently received a copy of a manuscript written by my dear cousin, Judy, in 1981. Judy was the daughter of my Uncle Frank and Aunt Claire, both of whom she predeceased. As noted earlier, she was the author of a textbook for medical technology students, of which I have a copy.
This paper concerns her personal situation and is called "The Handicapped At Home/revised for medical personnel." It details the care Judy received after the accident that left her paralyzed from the shoulders down (C-5,6) at the age of 22.
It's painful to realize how difficult it must have been for her to put these thirty-plus pages together. In Judy's later years, she used a computer, but they were not common 28 years ago. By means of a dowel fastened by Velcro on her right hand, she laboriously typed this letter by letter on a manual typewriter. The manuscript includes diagrams and photographs, but on my copy, the latter show up poorly, as it was duplicated on a black and white copier. That isn't too important, though, as Judy's words--calm, measured, and clear--tell the whole story. With great dignity and no self-pity, she outlines the incredible amount of time and effort it took to care for her. Even for non-medical personnel, it's enthralling.
And harrowing.
I will try to add some of the manuscript, at least a few times a week, if not every day; I will leave it exactly as written. I think the Byrne relatives who actually are "medical personnel," will find it interesting, but I believe laypeople, as I am, will, too.
I was privileged to know Judy. I visited her as often as I could and we corresponded via e-mail in between. I saw her a few days before her death. Our family was richer because of her and I think she would be pleased to know that her manuscript--and her person--have not been forgotten.