The Caregiver Years

1-6-12

It is so true Nursing is a calling. What could explain the joy I receive – caring for residents at a care home. This morning one of the residents told me she is wet and had been laying in her urine for a while. I asked her why she did not call us. We checked on her through the night and she was dry hence my trainer of the night believed it was for a while only. I was afraid to move her from bed to wheelchair. She asked me why the other caregiver did not train me to do it. I told her I come well trained but that we students move each other and it is different from moving someone so frail. She told me she is tough and not frail. The caregiver came to move her. It was exactly as we were taught. I will know how to do it now.

Once he had her in the wheelchair, I brought her to the bathroom. I got her changed and when she finished offered to do perineal care. She was shy about it. I told her it is my pleasure and it was. It is hard to describe the feeling of pleasure tending to her gently, carefully, lovingly. She was like someone precious and she is. I love her. I do admit to having my favorite though I love them all. And she is one of my favorite. She is a lady and so gentle.

Another resident, bed bound is lovely also and so sweet. She has big bright eyes and wide smiles. We love her.

Another favorite of mine is not everyone’s favorite. She is loud and flamboyant. I love her, she is so much fun to listen to. This morning, I brought her meds and found her hidden under thick folds of blankets. I greeted her and teased, “For a moment, I thought I lost you among the blankets.” She laughed, delighted at the teasing.

A male and in serious case of Alzheimer can get very difficult. Latin male is still latin male. Every time he sees me, he smiles, still the charmer. I learned how to manage him bit by bit. It takes a certain skill. I employed what Spanish words I know. Next time I am on night duty and nobody around, I will sing him some Spanish songs. That will get him to smile even more.

His neighbor is a man and very aware. A gentleman. I helped him three times last night. Again, it was a pleasure. He had diarrhea and the stench was bad but did not bother me one bit. What matters is he is a gentleman, a shell of what he once was and someone dearly loved by his son.

Yet another resident could only say yes. This morning she saw me and I heard her say distinctly, “Here she is…” She looks unhappy most of the time. I had been flashing her smiles like she is best of friend. Wait till I am alone on night duty, I will chat with her even if one sided. I get self-conscious and shy with people around me.

It is like when I am left alone with kids then I play very well with them and become one of them. As long as adults are present, I feel self-conscious and inhibited.

Just now as I got ready for work, I decided to take a little nap. Much to my surprise, my heart was racing like it does at 3 am – almost every night shift. Almost every time at 3 pm night shift, my mouth would suddenly become dry, my heart beat uncomfortably and sometimes I feel drowsy. That feeling always passed after a few minutes and I am fine again. I thought, don’t tell me after a few nights of work, the glamour is wearing off and I am dreading the 12 to 13 hours night shift. And this is the starting of phobia to it.

I lay in bed and could feel myself calming down, calming down, my spirit getting recollected. I realized how often when I am not careful, I would operate in hyper mode, my mind racing racing racing. I have to train myself and slow down. Slow down. I still prefer 7 pm to 7.30 am than 7 am to 7.30 pm. I will stay in the presence of God tonight as I work and at 2 am or 3 am engaged in meditation.

I googled on Alzheimer to learn more about the disease. I wanted to learn how to be with one of the residents. Knowledge can help me be with her better than unawareness.

She knows what she was at one time, she remembers what happened the day before – she had rebelled and refused to take showers because they did not ask her nicely. At the same time, she would stand, holding onto the bar, ready to sit down on the toilet seat and blank out.

I saw her mind as whole with holes and blank areas. Where it is whole is where she is able to recall her daughter’s visit with her granddaughters, and described to me what her granddaughter was wearing. Holes is instances where she blanks out which is very often. Because of the “whole”, I had inter acted with her and did not realize she has severe dementia. One would not know talking to her. Her blankness of mind connects to daily activities.

I did not realize there is stigma to people with Alzheimer until I did the ten signs of alzheimer. One caregiver who loves her a lot calls her “little girl.” I winced each time she says that because there is nothing “little girl” about this woman who is still in possession of herself even if not of her mind.

Matters reached a head when she rebelled against being treated like a child. The moment she saw me, she calmed down. I knew then I am like safe haven for her. She told me she is not a child and objected to being treated like a child. She was troubled she blew up. I told her it is good for her to push back and assert herself. Now they know who she is. I realized from it, it is important I learn more about the disease and how to deal with her. I have to become more aware of her blank areas and assist her there. Less is better in the sense of simplifying. Keeping things, words, concepts simple and avoid anything convoluted.

I was a bit troubled tonight because I was essentially encouraging her in her revolt. While it made her feel a lot better someone understands what she was going through, I could make myself unpopular with boss and co workers in such situation. I have to tread more carefully. I could achieve the same without encouraging her in her revolt. I told her it is right to push back to get the respect due her. I told myself not to be troubled but to pay attention to my inner senses and I would know how to deal with her and such situation.

From the above, I saw how necessary it is to educate caregivers about alzheimer.

They told me to be careful, a resident I will simply call Dora had been mean all day. I was not afraid. Dora likes and trusts me. She will be all right and she was. The moment she saw me, she tends to calm down and then confided in me everything that was going wrong in her life.

Yesterday, it was a client who was dying. His family warned me he could yell at me. He opened his eyes, saw me and smiled and was peaceful the entire night. I am aware I have a magic with those people. It is very simple, I love them and they know I love them. Simple as that.

S….

I spent one full day with him on a day shift. It did not take him long to tell me he almost died, his wife could not handle it, and left him. Beating all odds, he lived. And it was a constant daily struggle. It took him ten minutes often just to muster enough energy to move. He was only 54, and in his early forties when illness struck.

I talked when he talked. When he was silent, I stayed silent. I reckon as sick as he was, the last thing he needed was a talkative woman. We did talk, but most of the time we were silent. It was as though we were able to connect in silence. Neither of us feel the need to talk most of the time. At one point, he told me, “You know, Trudy, this time I feel I am either going to make it or die.” I assured him since he beat death once, he should beat death again.

I took care of him one more night when he fell and was hospitalized, I did not see him again until he came out of the hospital, thin and gaunt. It was my last shift there. I arrived to find the entire family there. His sister and day time carer told me the abscess in his brain has gotten to him. He had been angry, yelling at them all day. They warned me he will yell at me. I was not the least bit concern. If he does, I will not take it personally. They informed me he was dying and could die anytime.

I saw him laying on the couch and after signing in, went to greet him, he opened his eyes, saw me and smiled. And with that went into a place of peace. He was dying and I know for a dying person, touch is very important. I pulled a chair and sat near him and simply let my hand touch a part of his body. It was like a physical contact assuring him I was there and he was not alone. He opened his eyes a few times, saw me and smiled and slided back into sleep again. At one point, he woke up and sat, scratching his back. I remember a part of our study book suggested giving residents back rub to calm them down. I knew how to do it. I moved to gently massage his back for quite a while before his girlfriend came and got him to lay down. Gently because he was skeletal.

He actually woke up and wanted to eat. His girlfriend made him English muffin with fried ham. She fed him one half, I slowly fed him the second. His sister came in to check on him and was shocked. She assured us he will throw up. I did not think so and he did not. He kept it down much to her amazement. He had been vomiting everything solid he ate.

I took my station the entire night seated on a chair right next to him and stayed in meditative mode. His sister came out often to check on him. Four hours after I got there, she came out again and almost surprised, confided, “You know since you come here, I have spent more time with him than I had been doing. And I was here since Saturday.” It was Tuesday then.

I told her he opened his eyes and smiled at me a few times. She could not believe it and wanted him to open his eyes to look at her. It did not happen. When he next opened his eyes, I quickly got her to his bedside. She tried to get their brother to sit with him for a few minutes and he declined. After ten years of watching him suffering this way, the family appeared to find it too painful to be with him. They walked by, looked at him and moved to huddle together in a group, socializing with each other.

I stayed the entire night, in meditative silence, meditating, praying for him. He stayed calm and peaceful through the night. The following morning, his sister was surprised and told me she wish I could be there more often. My shift was once a week.

The experience moved me profoundly, the level of trust he had in me where the moment he saw me, he went into a place of peace. It affirmed to me that the calling I experienced to help with the dying is real and concrete. I was not afraid of him dying and in turn it appeared to help his sister.

I learned about money and resident in a painful manner. I had just arrived at the States, around two years after I left the monastery and full of desires to do something for God. One day, across the street from us was a geriactric home. I walked over and volunteered. I knew what I wanted. I told Sister Pat, I do not want to do anything they are able to hire people to do. I want to visit with the residents only. That is something they would not hire someone to do.

Sister Pat was only too happy to sign me up. My first day there, I almost turned tail and ran. The moment I entered, stench met my nostrils. I stayed and after a while got used to it and did not notice it. I visited with the residents, one was a man who cried daily because when one is old, nobody loves one any longer. He was obviously placed there and left there, with no one visiting him.

Several appeared happy enough. One woman loudly told me every time, “Spend everything you have. I saved and saved. What is the use, they take it all.” She was large, walking slowly using a cane.

One of them most dear to me was a gentle elderly woman who would always held my face and give me a kiss. I learned later she fell on her face and died that way. She was a lovely gentle soul.

After a while, I noticed there were some living in rooms by themselves. I forced myself to visit them. I did not like to knock on those doors and visit but full of good intentions, I forced myself to. I came across two women doing that. One was suffering from severe crippling arthritis. Another was a lovely elderly woman with large eyes and family who obviously love her.

The center had something going for Halloween and pumpkin competition. My husband went with me and took some videos of the event. I got him to take some with me talking to the woman. The video was likely nothing much for people there but for me, coming over from Malaysia, it was something great and wonderful.

It came to me, as much as her family loves her, they would love to have videos of those shots of her. There was only one problem. My husband was a very thrifty man, he would never let me have one of those video tape of him for free. I told the woman I could do that for her, except for the fact, I would not be able to get her the video tape for free. She would have to pay for it. On my own, I would have given it to her. But newly married and a bit afraid of my new husband, I dare not do it.

Looking back, the elderly woman has some form of dementia. The stately woman in wheelchair, crippled by arthritis came to me one day and told me coldly, that woman is confused mentally and to leave her alone. Something to that effect. She was very cold and hostile.

I was horrified, it came to me this woman thought I was trying to rip this elderly woman off when I only wanted to do something very nice for her family. It was very hurtful and I did not know how to defend or explain myself. In hindsight, I should have gone to Sister Pat. She would have understood and explained the entire thing to the woman.

I left soon after and did not go back again. Through the years, that memory stayed with me like a hidden shame, haunting me. Hence once I started work. I know never touch anything to do with money with residents.

I wonder why I did not share it with anyone. It became like one of those episodes in my childhood where I suffered something and kept it myself, haunting me through the years, never sharing it.

My next client was a man, D., and 101 years old. I imagined a man thin and wrinkled with age, with skin like a 90 year resident we had which was so paper thin, one wrong move and she bled. Imagine my surprise when I saw him. He looked 80, slightly stooped with a smile on his face and wearing glasses. Instantly, I relaxed. I knew I would relate to him instantly and did. The feeling was actually mutual. We started talking and did not stop till well after 11 pm. It became a pattern after that. The moment I arrived, we would start conversing till it was time for him to retire to bed.

Later, he told me what struck him was the fact I was able to read a painting of his. Most people would say, “It is nice,” and it ends there while I went into details and saw things others missed. It was a painting I sensed to be more biographical than most of his paintings. It showed a young man, thumb out hitching for a ride with his guitar in one hand, and at his feet bedroll and box with the word Nashville written on a cardboard tied to his guitar. D. saw a look of confidence on the young man’s face, “He leaves knowing he will succeed,” he told me. I saw instead, a look of apprehension in his eyes, uncertainty, some anxiety. He is leaving behind everything familiar, venturing out into a new world, into the unknown. I told D. I have never read or study paintings. I know only what I like, which paintings I am able to get inside and which I am able to relate to.

He showed me other works of his. I was enthralled by some of his early works of advertisements, especially those of children. D. is very good at capturing expression on faces of his subject. What I consider a stroke of his genius was his ability to sell a buxomly character for calendars. While most would sell a character thin and shapely he created a character shapely and buxomly with a lot of flesh on her. He explained that all women like her, the thin ones would think, I am glad I am not like her while the heavier would love her for being heavy and buxomly. He shared with me his past, his history, riveting tales of a young lad, young man, full of energy and very driven. He left for New York, seeking his future armed with little but his skills and talents at painting and drawing and made it as a renowned Artist.

And in that short span of time I got to know him, I learned a lot about painting and art, what brings out some features and what distracts from it. I learn from him also how to live life happily, doing ill to no one and good to all. I will always remember him and thank Life for giving me the chance to take care of him and got to know him and his valuable contribution to the world and world of arts.

It is most interesting and fascinating. I have always known I am very good with the elderly but I did not know my effect on them.

At my former work place, caregivers would warn me about residents who had been mean all day, wreaking havoc, leaving them drained at the end of the day. The first time that happened, the resident saw me and instantly relaxed, smiled and was never nicer. The other caregivers were her enemy. I was friend. Her friend was there, everything will be all right and she relaxed.

Another day, it was a different resident and this one could get very mean. Even her favorite caregiver, a young lad, was not able to handle her. Again I was warned about the situation. That resident suffered from some kind of schizophrenia. Her most loved caregivers had turned into enemies for her.

I went about my work, all the while thinking, how do I deal with this situation? An idea came to me. I brought her a list of her medication and showed it to her. She had been complaining about not being informed about medication she was taking. She calmed down immediately and was her old self again, warm, friendly and chatty and went into her stories again.

I often left the residents in the morning, happily congregating, chatting and waiting for breakfast. I realize I have a unique touch with residents. At the moment it boils down to the fact, they do not appear able to get angry with me.

One day it might happen and then I will say, good for my ego. It will keep me humble. 🙂

2013

Walking this morning, a humorous episode came to my mind. I was taking care of a very alert aware gentleman. He instructed his new gardener how he wanted his fence to be painted. Walking with the walker, he rounded up all the items, supervising her. Being new, she went along with it. It lasted until she had to undo the cap of the paint thinner; she was not able to do it. For a woman as tough and strong as she was, it was not likely she was unable to remove the plastic top. That was when she let off her steam.

Containing her feelings, controlling herself she let the gentleman know she is well able to do the job on her own. She knew what she had to do and would be able to work better without supervising eyes on her.

I laughed listening to her. Obviously, she has not worked with the really elderly. She was fighting a losing battle there. He stayed conveniently deaf and did not move from his perch until he had directed her to the last detail.

I learned that from looking after my mother. Peace comes from doing things when she wants it, not a minute later and how she wants it.

Client R. G.,

While some might feel called to work with clients with alzheimer’s disease or the like, mine appears to be with the dying. I was called to a client who was dying and did not want to die. He had been angry with everyone, fighting death.

Pulling up at the closed gate, I felt nervous and again nerved myself to simply move with the flow, minute to minute. Much to my dismay the gate was locked. It was a while before a woman came and opened the gate for me. Driving up, I saw another woman with long straight black hair. As I parked the care, both of them disappeared. I saw another woman and guessed her to be the night caregiver. We introduced ourselves.

She pointed to the client and told me that was our client. I looked at him and choked. He looked like dying. I was told he was dying, what I did not realize was that he was in an active state of dying. He looked so sick. I controlled myself, told myself to be professional and pushed aside the feeling. In that moment, I feel my spirit going out from me reaching him, connecting with him. He sat, head down, head almost touching his chest and sleeping.

I sat near him and read the notes on him. He stirred, moving restlessly. I reached out and held his hand. He calmed down and slept again. All I wanted to do during that shift was held his hand and stay in meditation. I had taken care of my mother when we thought she was dying and knew even though he appeared to be sleeping and not conscious, he could be going all over the place in his mind or sleep. It happened with my mother, to this day she believed I was with her when she roamed the jungle. In vain did I tell her she was at the hospital and was having vivid dreams. I knew also dying is a lonely scary journey, that if I held his hand, he would know he was not alone. From the way he gripped my hand every now and then I knew he appreciated it.

The woman who opened the gate introduced herself to me as his sister. When it was 8 am, time for his medication, she suggested I called his wife and wished me luck. She would not do it, she had been there before and, she would not want to call the wife. I went, and knocked on the door. When the door finally opened, a fat dog walked out. I got on my haunches and petted him; nothing like petting a dog to gain good graces of the dog’s mistress. It worked like a charm. I apologized for disturbing her. She told me no trouble and was very nice. When it was time to give him a change of clothes, I meant to ask her for a basin, she understood me to ask her how it is done and showed me. Together, we wiped him cleaned and got him changed. She was very loving with him and altogether very nice though I could tell she could get difficult.

I wanted to stay with the client only, he was dying and nothing mattered to me. I sat next to him and when he moved, reached to hold his hand. I read it helped them feel they are not alone. He went still and gripped hold of my hand. I did that most of the time. Whenever he became agitated, I would hold his hand and assured him it is alright and he would quiet down. Several times, my eyes teared. I asked Jesus, why is it so hard to die? He was suffering so much and hanging on.

Mid morning, the wife told me other caregivers work around the place. I did tell her to let me know what I could do around the house. She showed me the clothes in the laundry. I did that and took care of the dishes in the dishwasher and washed some pots and pans. After that, mostly I stayed with the client, moving aside when the family wanted to be with him.

His family would approach, saw he was sleeping and moved away, the nurse came, checked him and left him to sleep, the pastor came and seeing he was sleeping moved to talk to his family. I remained at his side. Every time he woke up, knowing how precious those moments are, I went to get his family who would hurry over to greet him, or talk to him. The moment he fell asleep, they left again.

My shift was ending when his young daughter drew near. I told her, every time her father moved restlessly and greatly agitated, I would hold his hand tightly, placing my other hand on his shoulder and assured him it was alright, and he would calm down. I went on to tell her, from the way he would tighten his grip on my hand, I knew he felt it. “How sweet,” the young girl told me and moved to hold her father’s hand. Not for my mother, I might have believed the same, that because he was sleeping he was oblivious to everything. It was not so. He passed away a couple of days later. It was one shift but a beautiful moving experience for me.

Direct caregiver
On news today they talked about vulnerability
Not as weakness but courage.
That is us, I thought, direct caregivers.
Often as I drive to work, the thought came to me.
Our work is not easy.
Every new client I get,
Every new job I am called to.
I go with some fear and trepidation.
With some apprehension.
How will the client be?
How will their family be?
Will they be nice?
Will I be treated like professionals?
Or will I be treated like maid.
Though the latter bother me little.
I know I am more than a maid,
More than a servant.
I am a professional directcaregiver.
Would working at a bookstore not be easier?
I asked myself.
No, I would not do it.
It would be going against my calling.
To bring some light, some joy
Some happiness to clients I work for.
That is a goal I must never forget.
You can do it, I tell myself,
You are good and you can do it.
Yes, this work is not easy.
It is not for the fainthearted.
It is for those only
With love in their hearts.
For the elderly, the sick, the lonely.
Yes, it is not for the weak
but for those with courage.
Courage, as we go to work.
Experiencing some trepidation,
Some vulnerability.

My last night shift with this client. The dil was most appreciative and said I am like a breath of fresh air. That she feels so secure knowing I am here. She was sad to see me go. Her appreciation warms my heart. It is not the first time such was said to me. It warms my heart. And makes me wonder what they see in me to find me so good.