Lingering Impressions

OVER 5 YEARS AGO

VIII

The next story will be out of sequence for the time-line of my experiences.  It happened today and I thought that maybe a tale of the impact that we can have and how experiences can impact us at the same time would be appropriate at this time.

The agency I worked for put me in charge of a home for 8 people.  I only worked there for some 2 or 3 months as I was ready to retire.

I have now been retired, sort of, for 5 years and am living some 50 miles from the home above.  I am grocery shopping for Christmas dinner to share with my children and grandchildren.  As I go down the isle of the supermarket, I notice a man pushing a grocery cart.  He is short, slender, bent over and with head down slowly making his way down the isle.  I pass him  I stop.  I know that man!

I wander back down the isle for another look.  Yes, it is him.  I tap him on the shoulder and say:

“Don’t I know you?”

He looked at me for a minute and then, and then, after some 5 years, he threw his arms around me and gave me a hug.

I guess you would only have to hear him talk to tell that he has limited use of his intelligence.  Some of his appearances would give him away, buy he really didn’t look a lot different then many other me I have known.  I remember him as always wanting to be part of the group.  On a nice summer day, when some of us went out on the back deck for a break, he would always be there.  Usually he would sit close to me.  As the conversation of those handicapped mentally may differ from the normal conversation, still we found things to talk about.  Maybe it would be who would do dishes that night or had someone taken his turn washing clothing or who would go with me to grocery shop.  Although my little friend would have little to contribute, he still would have his say on occasion. 

I do remember that he always wanted a hug both when I arrived or left.  I also remember that he was usually involved with getting our autism affected young man to the dinner table.  I can still see him, in my minds eye,  holding that you man’s hand leading him to the dinner table.  He would sit by him many times.

After five years, he still remembers me and rushes to me for a hug.  As he holds me and I hold him, I talk with his mother and father.  It seems that he was at the agency where I worked for some 15 years and then they had had some problems.  He now resides with his parents as they try to find an opening in the small town that has a place for him. 

We talk about some of options in a rural community as my little friend holds on to me and I hold on to him.  Then we go our separate ways.  As I sit and relate this incident, I can still feel his arms around my waist.  I still remember that I didn’t want to let go of him. I told him as I left and it was true;

“I have thought of you many times.”

I will think of him many more times!!

Other Characters

                    VII

At the firm I worked for, every patient was to have some outside activity every week.  Many times the patients would suggest or choose what they wanted to do.  From musical productions, (in the park and/or in a commercial building), to Sat night strolls in a local mall, each and every one of the patients had a chance to get out into the world.

The brothers above, enjoyed going to malls.  Although both would talk with other visitors of the mall, the younger brother was the flirt.  He had a crooked smile that won over the hearts of many a young lady.  Although his older brother could converse with almost anyone, it was this younger man who could attract the attention of the ladies. 

We would travel the length and breath of the malls eating at fast food restaurants and window shopping.  Occasionally someone would buy some item.  The patients received a few dollars a month and were quite good at saving up for a radio or a stuffed animal or whatever item caught their fancy.

As with any home situation where there are a number of people, ever so often tempers would flare and words would be spoken. 

One of the ladies in the home normally spent her hours in her own room.  But she would come out ever so often usually demanding some item or something to be done for her.  Her voice was one of those voices that just grate on your nerves.  The older brother above could hardly stand the sound of her voice.

He could be just as demanding as this lady.  His most common demand was to shut her up!  What made this so comical was that his voice was just as grating.  More so, he usually spent his time in the living room and he talked almost continuously.  So he is yelling at her to shut cause he can’t stand her voice and she is yelling back at him- at least this didn’t happen very often.

Before I continue on , let briefly note a couple of other examples to allow you to see the variety of characters we had in the different homes.  We had one lady, probably in her late 40’s or early 50’s who had a bad habit of lying.  And usually her lie had something to do with the fact that she had stolen the cigarettes of one of the help. She seemed to spend a lot of time wandering around the yard.  Another little lady in her 60’s had been the child of a rich couple who had traveled the world taking her with them.  She had a slightly nicer room because they had left her secure in her old age.  She worked as a bus lady at a local restaurant on Sundays and the help at the restaurant loved her.  Every time I saw her she had to show me her muscle and I just had to feel how much bigger it was getting.  One time she picked up a bowl of pine cones from under a tree in the yard and gave them to me.  For some time, every time I saw her, she had to know if I still had her pine cones.

But now we go to another patient who would “get under my skin”.

Sneak a Feel

To see previous posts on this subject, go to Out of sight-Out of mind on the left side bar.

                VI

There were two other brothers that I cared for in this home.  Both were in wheel chairs.  They were not twins as the afore mentioned brothers.

As with many brothers, each had a unique personality.

The oldest brother, quite soon after my arrival, asked for my help.  He needed to make a phone call and was having problems.  As I helped him in this effort, I learned that he had just returned from a trip and had met a girl who had promised to write him. 

The care center made a couple of “vacation” trips a year.  These trips would last for two or three nights and would entail visiting some spot where they could experience music or rides or other avenues of entertainment such as any young person would enjoy.   Usually, there were others there from other care centers who were handicapped.    Evidently, this older brother had met someone who appealed to him.  For several weeks, each time I helped care for him, we made phone calls and sent letters, all without any response.  This was the only time I ever saw him express any interest in the opposite sex.

His younger brother-that is a different story!

Neither one of the brothers could get in or out of their wheel chairs without help.  One of the problems with this, as well as with all the patients, was that the patients used this handicap to their advantage.  Any new help would soon find that these patients needed all types of tending.  The care centers had a policy that each patient was to do all he could on his own.  Sometimes, new help learned this principle slowly and worked a lot harder than necessary.

In the case of the two brothers, they even needed some one to transfer them from their wheel chair to their beds at night. But they could feed themselves, although needing some one to clean their face as well as the space around where they sat at the dinner table. We also allowed them to undress themselves before bath time and allowed them to dress themselves for bed.  With a strap around their waist to prevent them from falling out of the wheel chair, they struggled to put on socks and pants; by the time they finished dressing themselves and taking their medicine, it would be bed time and they would be wore out.

Bathing could be a problem.  Most usually, the majority of the help was female.  Our procedure  was to transfer them to a water proof wheel chair after they had taken off their clothes.  We had a large shower area and a flexible hose on the shower head and made them, as best they could, lather themselves before we rinsed them off.  The had to lather their own private parts.

Nurses bathe male patients in hospitals all the time.  No big deal, RIGHT?

Except this younger brother, well, he couldn’t keep his hands to himself!!!

He was always "sneaking a feel”.

And when we hired an especially well endowed lady,  eventually she refused to give him a bath.

           

Almost an Animal

                                                                V

I began work in one of the homes as an extra, working shifts as a fill in. The first home I worked in had 8 patients. Not one of these patients could have survived on their own. Not only were they incapable of cooking for their selves, but many needed some one to bathe them. A few were in wheel chairs and some were even incapable of moving from the wheel chair to their bed. As I have mentioned earlier, they were incapable of even reading. Of the patients I dealt with during my stay as a helper, the one who had the least amount of control over himself was a young man, only slightly better than his twin. This young man looked almost like a body builder, but was incapable of walking. One of his legs would not extend and support his weight. When we took him anywhere, two of us, one supporting him on each side, helped him struggle to the van. In the home, he roamed the house by crawling. He had his own room, but spent most of his hours on the floor in front of the television. I never heard him speak. He never appeared to be watching the TV, just laying there. Occasionally, I would see him look at me or someone else with his head cocked to the side and his mouth opened wide as if he could bite someone. If you have ever seen a picture of a bear roaring, you would have an idea of how he looked. In fact, any time I walked by him close enough for him to reach out to me, I kept a wary stance around him. He had attacked staff and even took a bite out of one lady’s breast. Although he reminded me of an animal, our job as staff was to treat everyone as humanly as possible. I would speak to him as I passed him and sometimes lay my hand briefly on his shoulder. Never was their any response. As time went on, I noticed that sometimes he would lay on a couch across the room from the TV, still without any response to outside stimulus. There were times when feeding, bathing, and other chores were done and we would have time to socialize with the patients. One evening I noticed this young man lying on the couch and I went over and sat down at the end where his feet lay. After I had did this several times, I picked up his feet and lay them on my lap and for some time massaged them. I never saw any response of any kind from this man, but he would allow me to massage his feet as long as I had time. Earlier, I mentioned another man who was losing all control of his muscles, yet his mind was still clear. Whether this man that I just described, was even able to have a thought was unknown to me or the rest of the staff. At one time in the near past, he would have been stuck in a room with maybe a mat and maybe a change of clothes and allowed to spend his life in solitude. I think of both of these men, neither able to care for their selves through no fault of their own and think that I could have been either man. Today we are caring for them. Maybe we have become a little more civilized.

So Small, So Quiet-I almost missed her

        III

After a few days of picking up and dropping off patients, some conversation was beginning to occur and I was beginning to pick up on some of their traits.  One evening, after they had all loaded and I had checked to make sure they all had their seat belts on, I turned in my seat and addressed them. 

I said, “Would any one like to sit in front with me?”

It was quite oblivious that they were interested, so I continued, “We will take turns and the one in front is not to talk, but is to help me drive.  When you see a stop light turn red, you will raise your hand for me to stop.  When the light turns green, you will move your finger forward to let me know it is alright to go.  When we go by streets that have cars coming down them, you are to point at the cars so I will be careful.”

I was talking to them as though they were children.  Later I would find out more about their abilities as each had different afflictions.  Only one was able to read or study and probably at about the 4th grade level.  Their ages ranged for middle 30s to past 65.  I gathered that many had had their parents take care of them until the parents became unable to continue that responsibility. 

One of the first to take his place up front helping me to drive was a man well into his 60,s.  He would sit in the passenger seat and use his hand and finger to help me drive.  Sometimes I had to hide the urge to smile as from outward experiences, he seemed to be a normal older gentleman with child like actions and they didn’t quite jibe.  With a rotation twice a day, each rider would have a chance to be up front at least once a week. 

Although I told them that I expected them to “not talk”, I would engage in conversation with them and I would ask him a question or make a comment about some happening on occasion.  He would barely reply if at all.  One day, he pointed over to a little suburb as we passed and said, “I lived in one house over there for 64 years.”

We never had a long conversation, but from that day on, I would have some response on a regular basic from him.

I tried to talk to and treat each as a person and even though their IQ may not have been very high, we still had some interesting conversations.  One day when we were getting ready to leave for our trip taking them home, I happened to look at the small lady sitting in the middle of the seat right behind the drivers seat.  She had Downs’ Syndrome and could have been maybe 50 along with a very small stature.  I had been told that she was deaf and could not hear me and as she never needed any prompting, I had no reason to believe otherwise. I had not included her in my rotation of help drivers,  Yet she sat there studying my every move and seemed to hear word.

I said, “Would you like to drive?”

Her eyes lit up and she shook her head rapidly up and down and so I put her in the rotation.  From the first day as my assistant driver, she knew exactly what to do raising her hand to stop and signaling me to go.  Her concentration was totally on her job.  I will never forget that look on her face when I asked her if she wanted to help drive, more so, I wonder how many times we over look some one because they are small or quiet or we have been told something about them, in the process not only depriving them of the pleasure of helping, but depriving us of skills never to be used.

A Mind Trapped in a Body

II

 My van had two front seats and two rows of bench seats directly behind. Behind this space was room for two wheel chairs side by side. Normally I would have 6 passengers that occupied the seats and two wheel chairs with patients strapped to those chairs. Before I can explain the next incident, I must first explain the music and how we determined who would sit where. Who ever had this route before me, had placed the passengers in the two bench seats. The passenger seat in front remained empty. The radio station had been set by the director and was not a station that I enjoyed. So, on one of my first trips, I asked the passengers if I could find another station. As I was turning the dial, I happened upon an “oldies rock and roll” station. I asked if this station was ok and since we were all new to one another, I was met with silence. In time, various patients would join in and sing along with a familiar song. Each trip, morning and evening took around an hour and a half not counting the time involved before I picked up my first passenger or after I dropped off my last passenger and headed back home. At my first pickup point on the morning run, I picked up one young gentleman, I suppose around 30 or 35 years of age. He was almost always a little late. Not enough to cause any problems with my route, but giving me a few minutes to become acquainted with the staff of the home. The reason that he was late was that the nurse responsible for getting him dressed and fed worked at another job and always ran a few minutes late arriving at this home. This man had Lou Gehrig's disease. He had been a tour guide before becoming ill. He had progressed to the point that he could not control his bodily functions, so he wore a diaper. He could not control his hands, so he had to be fed. He had to be cleaned by a caretaker. About the only thing he could do was manage a mis-aligned smile. You could tell when he was happy and that was an almost constant thing. While waiting for him, I would go into his room and talk to him. Of course it was a one way conversation as even a grunt was almost beyond his control. As I understand the disease, even though he gradually lost the use of all muscles in his body, his mind remained clear. He had a collection of base ball caps and pictures from Playboy. He seemed to enjoy watching TV. I loaded him along with his wheel chair into the back of the van and the other two passengers also climbed into the van. We began the lengthy trip to pick up the rest of the patients. We picked up the rest of the patients and as, by time, the patients were becoming comfortable around me, the van was fairly noisy. Then out of the blue, I heard this young man trying to sing along with the song on the radio. An outsider would not have recognized any “music” in the noise he made, but as I looked in the rear view mirror, it was oblivious he was trying to sing. The effort required soon took its toll and he was quite again, just as I had always known him. His soul, his mind, trying to escape the prison of his non-responsive body.

My first day

                                                           

I
One could only describe her cry as a shriek.  As I looked in my rear view mirrow, I saw her body stiffen, straining against the straps that held her in the wheel chair.  Her body stretched over the back of her chair, her head hanging behind and below my vision. The shrieks continued, growing louder,

“What have I got myself into?”

With only a few months to go until I retired, I had applied for a job driving a van hauling people, unable to care for themselves, to adult day care centers.  I had rode with the director for a couple of days and he had then turned the van over to me.  He had showed me how to strap the wheel chairs in the back of the van where a seat had been removed.  He made sure I knew the route both in the morning when we picked every one up and again in the evening when in the evening when we took every one home to their centers that would care for their needs during the off hours.  Only the least capable of the adults I carried, would go to the day care center.  The rest would go to “make shift” jobs. 

No one had warned me of any problems I might encounter!  With her head hanging over the back of her chair, with her body appearing to have some kind of “fit”, would she swallow her tongue choking her self?

I pulled off the road and turned in my seat to check the situation. 

“She will be ok.  She does this all the time”

I don’t remember who said those reassuring words.  As I came to know my group of riders, I would find that hardly any could read and that they all were handicapped in some way, almost always mentally, physically and emotionally.  But as a couple more of my riders agreed with the first speaker and as I saw that she didn’t seem to be in danger of choking, I continued my run.  Eventually her screams would cease.  Within a short time, she was removed from the home where she stayed.  Later questions about her welfare would not yield much information.  At the time I thought that she would be the most handicapped that I would have as a rider.  Not quite!

The company that I worked for in a major city, took care of over 600 people who had needs that they could not fulfill on their own.  There were other companies that also helped fulfill this need.  Not all of these people need full time care.  Many only needed someone to visit once a month to make sure they had paid their utilities or needed someone to make sure they were eating decent meals.  Others needed someone to check on them on a weekly basis or some needed some one to spend the night making sure they took their medicine.  Others needed someone to bathe them, provide meals and any other needs.  The adults who needed full time attention lived in homes with as little as 2 people or as many as 8 in the home.  Full time care takers rotated shifts to provide for these adults.

I had not been aware that there were so many adults that needed help.  Seldom do we see these handicapped adults.  Although we may see many in wheel chairs and sometimes they may need help, the adults that I was dealing with had other emotional and physical problems that compounded their problems.  In spite of their problems, I was about to embark on an adventure of a lifetime.
            to be continued