A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.
The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.
So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?
At first I really want to work in the hospital. Since I was in primary then my secondary school, I made my decision to study nursing. Unfortunately, I got married when I was only sixteen.
I’ve been a good mother of seven. I went to school just to inquire some other details for my kids.
Its just so happened that I saw caregiving course. Really don’t have any ideas about it. So I enrolled the class for almost nine months. So excited to finish my class despite of all challenges, circumstances and even lack of transportation expenses.
I just gave my all just to get into the finishing line. And yes I did it!! Passed the exams!!
After a year one of my colleagues called and introduced me to her client (patient). Got my job!!
From 2009 up to present (my patient passed away 2012) they still kept me and they also allowed me to work. But I will still stay with them.
I started caregiving in 2008. I went to work for a company that cared for
folks with developmental disabilities. It is a rough field but managed
stay for a year and a half. I decided to leave there when I realized my own
physical capabilities. I was 57 at the time.Kathy
For me becoming a caregiver came with my profession which I chose, but I think I would become a caregiver anyway.
31 years ago I helped a lady I knew from a restaurant I worked at! Then after gaining much life experience and skill I decided to start my own company!
My mom’s first open heart surgery happened when I was 12yrs old. Became a caregiver then…. Became a live in caregiver for an elderly lady at 18. Going on 36 now and am currently on my 8th person don’t know that I’ll ever stop.
Going to see my Grandpa in a long term facility. Then I was trained as a CNA at the same facility. Then I was trained as a nurse at another facility. I found I really enjoyed working with the elderly. I loved to listen to their stories about when they were younger. When I go see my Oma, I still love to talk to the resident’s and hear their stories about when they were younger. I had to retire completely when I was 32 due to MS.
You know what makes being the caregiver to a disabled adult (24 years old) suck so damn bad and why it is the most aggravating job that I will NEVER do again (sorry to our family that is aging, but when you can no longer take care of yourself, into a home you will go)?
When you care a LOT more than they do.
When everything you try to do for them that is good for them is met with a fight.
Like opening the curtains every day so he can see the sunshine.
Like asking him to drink water every day to stay hydrated.
Like putting 1 scoop of vegetables on his plate so he gets some vitamins.
Like trying to urge him to have an applesauce squeeze pouch instead of the s’mores poptarts.
Like asking him to call his family that loves and misses him.
Like asking him to have some independence and look for things he needs just for himself online that cannot be purchased locally.
Like asking him to check his bank account balance over the phone.
Like having him make appointment arrangements for himself.
Like asking him to be accountable for his own hygiene and ask for a toothbrush, a washcloth, some deodorant, a Q-tip, a fresh bathroom rag, nail clippers, a napkin, a new shirt when it gets dirty, a bath when he needs one (before he needs one, in fact!).
Like asking him to be courteous of us cleaning up after him and to warn us that his pee rag is sopping wet because he spilled a little when he went before we pick it up with our bare hands.
Like thinking ahead when he knows he can only pee in his urinal twice without spilling and letting us know he needs it dumped when he finishes going the 2nd time instead of when he needs to urgently go a 3rd.
Like being mindful of his own medicinal needs and to remind us that he needs to take his laxative drink now because sometimes we are running around or cleaning up or cooking, consoling a cranky baby etc. and it slips our minds.
Like letting us know when he starts to get hungry instead of waiting until he is starving to want something right now.
Like begging him to get into his chair today to go down to the park and see some of this world in all of its beauty.
Like trying to have a meaningful conversation with him to be dismissed as soon as the last word leaves our mouths so he can tell us about the blue fire he made in Minecraft.
Yes, he has many needs and yes, we are here to help him because in his position, he cannot physically do very much himself, however when he doesn’t even care about his own needs, when he continuously refuses to take care of the things he CAN take care of for himself, how are we supposed to feel? Every single day it is a fight of some sort, a plea, and ultimately a long, inward sigh of sadness.
by Linaia Le Doux, originally published on our Facebook page.
The other day, my daughter and I made pizza together. I bought some pizza dough in a tube which, as I’m writing this, sounds gross, but what are you going to do, if you’re not a domestic goddess. We started well in advance of when we needed to be done. We read the directions, popped the tube and Rose went to work rolling out the dough. Only, it didn’t roll out.
While I grated cheese, I watched her grapple with it, her frustration increasing with every pound of her delicate fists. I figured it needed a little more muscle. I put the big guns to work. I kneaded, pressed and patted it. I massaged it with all the pizza love I had in me and, if you’ve seen my wedding cake, you know I have some formidable pizza love. It remained on the cutting board, a cold, unyielding lump the color of death. Even the rolling pin hardly put a dent in it. Meanwhile, the time was fast approaching when my big husband would bound through the door, growling like a hungry bear.
I began to get desperate and a bit silly with exhaustion. Why not? I thought to myself. Nothing else I’ve tried has worked. I whipped that inflexible blob into the air, tossing it just like I’d seen elderly, Italian gentlemen with moustaches do it. I whooped and hooted and tossed, delirious, insane, no longer caring about the time or the fact that what I was doing was making no difference in the dough at all. The difference it made was in me. It released the tension I was feeling. It melted away the frustration.
I work as a health care aide on the geriatric unit of a hospital. A co-worker and I were talking about how important a sense of humor is in the work we do. She told me about how she shared some funny moment from work with a friend and this friend abruptly informed her that such things were NOT funny. It’s true.
We see pain, suffering and loss on every shift. It’s serious and heartbreaking, it’s, literally, life and death. We can be long-faced; we can try to turn off those emotions that don’t fit the gravity of the situations we encounter; we can detach and harden our hearts; we can become depressed and weep over the deep sadness of it all, but none of these things will help our patients heal.
To begin with, the hospital is dark, cold, stark and sterile. It’s unwelcoming and for some, it’s scary. Though they try to dress it up with art and murals, it doesn’t change the fact that it’s an institution and not the comfort and relative safety of one’s home. I believe it’s my job and my duty as a human being, to spread joy, to lighten up the atmosphere around those who are ailing.
The smiles and gentle teasing are part of the rapport that must grow between patient and caregiver to enable the patient to trust and relax. Yes, the confused and demented say amusing things. Frankly, I view these instances as little gifts from God, stress-reducers in an emotionally charged, high-pressure environment.
When we giggle over something the patient says, it’s not to point and laugh at them and, most often, they giggle right along with us. There is a beauty and innocence to many of these people that makes their comments precious and even insightful. I find myself collecting them like pearls on a string. I drop them here and there and their luminosity and sweetness invariably lifts others up.
The people I serve make me happy, even if they don’t know it and I won’t apologize. I only hope, in some small way, I can do the same for them.
On the night shift, someone was calling out in the dining room in the early morning.
Old gent with Dementia, poking his head out of his room: “Someone is yelling out there and I haven’t got my shot gun.”
I tucked in next to him, hoping to nudge him back into his room.
Old gent with Dementia: “What are you trying to do? Get behind me so she can shoot me instead of you?”
I explained that his room was the safest place to be and he shuffled inside.
Old gent with Dementia: “Why is she yelling like that?”
Me: “She’s sick. She’s lost her mind.”
Old gent with Dementia: “Most women have.”
Me, as I escorted this Old Gent with Dementia back to bed: “They’ll be coming by to get you up for breakfast soon.”
Old Gent: “You mean I have to go down with the commoners again?”
Me: “Oh, are you royalty?”
Old Gent: “Yes, I am. I’ve been telling them that, but they won’t believe me.”
Me: “What’s your title?”
Old Gent: “The King of Fifth Street.”
I looked across the dining room to see Sweetie, speaking her usual gibberish, sitting at the table in her wheel chair with bright green, amoeba-like globs of mucus spattered over her bib. I promptly went over and changed it. Standing behind her, I secured the fresh bib around her neck and then put my face down next to hers, giving her an impromptu hug.
“I love you,” she said.
Two Sweeties approached me in the hospital hallway. Sweetie #2 was weepy.
Sweetie #1, with concern: “You’ve helped me many times in the past. Can you help this woman? She needs a hug.”
Me, throwing my arms open wide to Sweetie #2: “Of course!”
I administered the medication.
The other day, I was answering a bell and the gent was sleeping. I nudged him. “What do you need?” I said.
He looked up, slightly bewildered, unaware that he had pushed the nurse button. “Well, it’s not my birthday, but maybe you could sing O Canada for me.”
I obliged and this toothless gent joined in, all off-key and smiling away. After our duet, he commented about how fortunate we are to live in this country. Indeed. I thanked him for the reminder.
99-year-old sweetie, standing by her bed: “Should I jump into bed now?”
99-year-old sweetie, after she turns and slowly sits down: “I forgot to jump.”
Same 99-year-old sweetie, as I’m wheeling her carefully down out of the shower: “I’m a heavy, old bag, aren’t I?”
99-year-old sweetie, as I turned her light on this morning: “What did I have, a boy or a girl?”
Funny female patient with no filter: “I see you’ve got your winter tires on already”.
She pointed at the rolls of flab around my middle.
Me: “They’re All Season.”
I whizzed by a patient’s room on my way to somewhere else, when the patient called out to me. “I’ll be there in a moment,” I called back.
When I arrived in his room he said, “I only wanted to point out the beautiful sunrise this morning, but, as you can see, it’s almost gone.”
I was surprised and delighted by this uncommon summons. I assured him that I had caught a glimpse and explained that I noticed, since moving to Lethbridge, the unusual beauty of the sunrises and sunsets here.
“Why do you suppose that is?” I asked.
“Because we are blessed”, he said.
Me: “It’s early in the morning. You may want to get a bit more shut eye.”
Lovely Lady preparing for the day at 2:00 in the morning: “Did you hear about the lady that went to heaven?”
Lovely Lady: “Well, that’s me. I’m going to heaven today.”
Lovely Lady: “Well, not right away. My daughter is picking me up first and taking me shopping. I need some towels for heaven.”
I am currently doing a temporary run of full-time nights at the hospital. I float around the darkened unit like a goodly ghost, stocking up the necessities for the next day, tending to those with night-time woes, offering quiet care and smiles. I recently was helping a lovely gentleman with dementia get washed up.
“Pooky-face”, he said randomly.
“What’s Pooky-face?” I said grinning, unable to hide my amusement.
“Oh”, he sighed, “just a little name I like to call myself”.
Talking with an elderly resident today.
Me: How long were you married? (His wife had passed)
Him: 37 years.
Me: Congratulations. That’s a long time to be married.
Him: Not long enough.
A Married Couple on the Dementia Unit
Him, rising from the dinner table: “I’m going to get up and walk around.”
Her: “What are you gonna do while you do that?”
Him: “Think about you.”
Me: “How are you today?”
Lovely Lady: “I’m old.”
Lovely Lady (a self-proclaimed Missionary’s child), just a little anxious, after being lifted into bed safely: “How do we get ourselves into these predicaments?”
Me: “Well, someday, when we go to be with God, there will be no more predicaments, only peace.”
Lovely Lady: “You’ve got it all figured out, don’t you?”
Old gent approaching me at an injured snail’s pace: “How are you?”
Me (bright and cheery): “I’m well! How are you?”
Old gent: “Goin’ like hell.”
Me to a gentleman struggling with Parkinson’s Disease: “It must be very hard to have Parkinson’s Disease. It must be very frustrating.”
Gentleman, wiggling with a mischievous grin on his face: “It drives me crazy and with me, you don’t have to drive very far.”
I spoke with a doctor recently. No, it wasn’t concerning my health. He sat down to talk with me about my chosen profession as a Health Care Aide on the Geriatric unit of a hospital. He told me a story about a woman who worked in his office as a medical receptionist. She was a bright, intelligent lady and he thought her giftedness was wasted in her current position. “What are you doing walking people back to the examination rooms?” he said to her. “You should become a nurse and save some people’s lives.” He gave me essentially the same speech. While I appreciated how he affirmed what he saw in me and his encouragement to reach my potential, I also felt frustrated. Here are my reasons:
We value celebrities, sports heroes, surgeons, rock stars, scientists, people who are at the top of their fields, people whose accomplishments are notable, flashy or life-changing. We like what they do and pay handsomely for it. There are thousands of others who do important things for more modest sums with no accolades, such as sanitation workers, sewer inspectors, porta potty cleaners, janitors, housekeepers, fast food employees, restaurant staff, cashiers, gas station attendants, childcare workers, to name just a few. There was talk in Calgary a couple of years back about the high cost of living and how people in such low paying positions may not be able to afford to stay. Imagine a city the size of Calgary losing all of its janitors!
We live in a complex society, highly diversified and requiring people of all ages, levels of education and skills. Why do we rank such tasks, as if one is more honorable or valuable than another? What if we tried instead to appreciate people’s contributions, whatever they may be?
In this culture, reaching your potential is often about striving for more. There is pressure to be more than you are, do more than you think you can, and have more, even, “have it all”. There are mountains to be scaled, marathons to be run, books to be written, cures to be found, and, yes, lives to be saved. Many of us our driven by this thirst for more to reach and surpass the extent of our limits, but I wonder what we sacrifice in this constant striving of ours.
Why is contentment still so underrated when we view the wreckage of stress-induced illness, addictions, divorce and the dissolution of the family? True, there are people who are to be marveled at for the amazing things they accomplish and, if what they’ve done is truly remarkable, they will go down in history. Then there are the rest of us, all drops of crystal in a sea of souls, who are just trying to scrape together the best living we can.
I’m glad there are those among us who are visionaries called to extraordinary purposes who give their lives to change the world. I’m glad there are also those among us who go to school and work hard to learn specialized skills they put to use to improve all our lives. This world would be a much different place if we all sat on our couches watching the tube and eating chips, but most of us our not destined for the history books or even for higher education and that’s okay. Some of us are destined for more common uses, like waiting tables, cleaning toilets, and wiping bums.
I thanked the Doctor for sharing his insights with me. I believe he meant well. I don’t think he meant to demean my position, but I do believe it’s a necessary one. Someone somewhere decided that nurses needed help. With Health Care Aides on the floor assisting patients with their activities of daily living, nurses can focus more on their patient’s medical concerns. I feel I provide an important service in an overtaxed system and I’ve often said I believe it’s a privilege to do what I do.
What if reaching my potential is not about becoming a nurse, but more about becoming the best human being I can be wherever I find myself. I told the doctor that if I wanted to be a nurse, I could be, but I’m content to be a Health Care Aide. Someone needs to do the job and do it well, with compassion, patience, and kindness. It might as well be me.
I work as a Health Care Aide on the Geriatric Unit of a hospital and I always tell people how much I love my job.
The other day, I was reminded why. I was about to give a bath to one of our patients, someone who tootles around in a wheel chair, not really relating to anyone anymore, because he isn’t able. It’s easier and quicker to give someone a shower in their room, but I don’t mind bathing people, if I have the time, because most people really enjoy it.
This man, who doesn’t talk much, remained true to form, but it was the expression he wore, the way his whole body relaxed when I lowered him into the tub, the way he sighed when I scrubbed his head, the way he combed the warm water through his fingers that spoke to me. I felt at once humbled and grateful.
I was reminded how much joy comes from the simple things in life. I was grateful I was able to give this man, who has suffered and lost so much, a little bit of pleasure. In a flurry of towels and warm blankets, I finished up and deposited him in his room. I came back to put fresh linens on his bed and he was snoring contentedly in his chair.
I recently found out my hubby has PTSD and Panic Disorder from his SCI 2 years ago.
I’m his primary caregiver have been through everything with him since the day he came home. We grieved the loss of our dreams for the future, so depression has been a part of both our lives since then as well.
But lately I’ve noticed he and I take longer to bounce back and in some ways we are more affected by acute health issues now. Breakdowns and depression episodes, even when managed, seem to be more off the scale than ever. PTSD is very real. It all starts with affective disorder, not just how people treat us because of disability, more how we are left feeling. It feels like illness is costing us our dignity — many times we have little money for food or medication and we’re selling family home to rent something.
We feel everything more now. Pain is worse, hurt is worse, reactions are worse. Cognitive therapy helps those that talk. My hubby and I have always talked through things and faced realities together, especially since I’m a psycho social rehab practitioner. It’s good to face those realities and not pretend they don’t affect us. Knowing and accepting the new normal is key.
There’s so much stigma around mental health issues but education is key. PTSD is suffered by many caregivers, be it front line or at home, and many patients have triggers. We need to respect peoples experiences, individuality, and triggers. For some people the trigger can be pain or not being validated. Some people may need you to respect their personal space. It’s important to let people talk if thats how they cope in a situation.
…and the rewards that come with it
In my previous article, I mentioned the challenges of being a professional caregiver. Now, I will be discussing how rewarding being a professional caregiver is. In the midst of all the ups and downs as a professional caregiver, I was able to work on my personal development. Since certain clients tried to take advantage of me, I had to set boundaries. Setting boundaries allowed me to gain self-confidence. Another factor that contributed to my self-confidence was the fact that I had to advocate for my clients. As I advocated, I interacted with social workers, health care professionals, and institutions. Because of the interactions, I was also able enhance my articulation.
In addition to being a professional caregiver, I am also a full-time student. This enabled me to gain another reward, which is developing time management skills. I must admit that there were many times when I wanted to crack. Sometimes I had the chance to brush up on homework at work, but if my client ever wanted to go outside for a walk, I was screwed. At those moments I was so frustrated and couldn’t wait to get back indoors. Okay, maybe I was being selfish. I mean I was there to work and not to do homework, so I reminded myself multiple times that it’s not about me, rather it’s about my client. I still struggle with these two commitments, I definitely don’t have it all figured out. I practically stay up till midnight studying and reading, which gives me five hours of sleep. The thoughts that races through my head almost every single day is “oh my goodness, why are you doing all of this…you are killing yourself.” I oftentimes wish that I did not have to work but how will I support myself?
As a Sociology student, I focus on theories and the population at large, as a professional caregiver, I help individuals who may have chronic illnesses, mental health issues, and physical disabilities. I also assist the elderly. Although, in my perspective, these two commitments seem different from one another, I have thought it out and I realized that they connect in a few ways. The connection exist because I have learned so much about society and how it operates. For example, I have learned that certain populations struggle to obtain resources such as food and shelter, which results in depression and anger. I took a Sociology course last year that touched base on the elderly population. It was interesting to learn that many of the elderly feel isolated. Due to this isolation, the elderly are more likely to move in with a family member. I also learned the concept of ageism and I see how my clients challenge with that. This usually occurs when strangers state offensive comments pertaining to age such as “move old man.” Thanks to my knowledge, I understand why such situations occur and I know how to respond to them.
Aside from those two commitments, I have a wonderful social life. I have friends that I truly love to spend time with. But since I have such a tight schedule, I hardly have the time to see them. Many of my friends are college graduates, so they have a lot more time to hangout on the weekends than I do. Whenever I get invited out, I just cannot make it with the overwhelming schoolwork that I receive. However, I do make it to special occasions such as birthdays and big celebrations.
During my commute from work to school, I map out in my what readings and assignments should be done next. Then I note it in my phone. If I’m lucky enough to get a seat on the train, I take naps, which gives me a boost. Being a full-time student and a professional caregiver is a double-duty. I must say that it is not easy at all but I’m sticking it out.
As an unemployed 22-year-old, I felt stuck. As a full-time student, I needed to find a full-time job to support myself. I decided to go to a home care agency to look for employment for two reasons. First, I love to help people and second I knew it would be convenient for my school schedule. The training started in May and only lasted a month. It was perfect timing because the school semester was ending and I knew that I would be able to attend the training. The training was the easiest thing on earth. Within a week of finishing the program, I was sent to someone’s home. The clients that I helped suffered from mental illnesses, health problems, and physical disabilities. I cared for people with conditions including diabetes, strokes, cancer, high blood pressure, bi-polar disorder, alzheimer’s, multiple sclerosis, and arthritis.
Walking into this job as a young home health aide was very difficult. I encountered many challenges but I never gave up. Because of mismanagement in the home care agency, I was sent home from cases because clients stated that they were unaware of my arrival. Since I was younger than what clients expected, I often felt judged. That is one of the most persistent challenges that I still face. Clients would say comments such as “you’re a baby, what are you doing here?” or “you’re so young, you don’t know what to do.” I always either ignored those comments or responded professionally. Clients also thought it was okay to try to take advantage of me. For instance, I had this one client who would send me back and forth to the store, it was so unreasonable. That’s only the beginning of it, her husband who I wasn’t responsible for developed this idea that he could tell me what to do. From experiences like these I learned to set boundaries, I told the both of them that I was only there to help the person I was assigned to assist.
On another occasion, I was forced to stay on a case that I was uncomfortable with. During the hot summer, I was ordered to go from supermarket to supermarket to pick up flyers. Yes, flyers, could you believe that? The client wanted to flyers, in order to choose what she needed from the supermarket. This one particular client was also very particular about what kind of crushed ice she wanted from Dunkin’ Donuts. In addition to all of this, I also worked in a unhealthy work environment, meaning that there was no air circulation during the heat wave. I called my agency multiple times and they would not allow me to leave the case. The only way I got removed from this case was by going into the agency. At last, I was replaced. Overall, the clients listed above were absolutely difficult to assist.
As of now, I am helping one of the most amazing clients on earth. He hardly ever gives me a difficult time. He is amazing because he is kindhearted, funny, and the best storyteller.
Besides the obstacles, I must say that being a professional caregiver is rewarding in really meaningful ways. Throughout the years, I have gained a lot of self-confidence. The confidence has come from setting boundaries and being assertive. I am also able to practice and enhance my articulation skills as I communicate frequently with health care professions and social workers. By far the most rewarding part of caregiving has been listening to my clients’ stories as I appreciate every moment of it. Listening to my clients’ stories is meaningful to me because I enjoy hearing their insights and stories about life before the onset their illnesses.
The author wishes to remain anonymous.
At the end of some days the job itself might leave me worn physically, mentally, emotionally or hell, even spiritually, sometimes.
But there are those rare times, though sporadic, they are so much more enormous
When I find myself aiding someone who is able to hang on to a moment of clarity long enough to tell me that I have made a tremendous difference in their world.
That I have helped them clutch onto hope that they thought was gone in the reassurance that it’s all going to be okay no matter what happens.
That I make it so they aren’t afraid while I’m with them–
That’s what keeps me going.
That’s why I don’t break.
It’s how I know I’m in the right field.
Because no matter how exhausted I am
My heart stays, even grows more, compassionate and understanding-
And the people I help can still feel it.
They keep me valued, humbled and encouraged.
by Charissa Lassiter-Hall
Who is a caregiver?
Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.
Tell us about yourself.
What can I say? I am 22 years old, fixing to be 23 years old in December. I am currently studying online for my bachelor’s degree in criminal justice with a minor in sociology. I am big sister to two boys and sibling to two others I have never met.
Besides “caregiver,” what other identities do you have?
I am a book-lover and a cat-lover, big sister to two boys, four if you count the siblings I have never met. I am also the girlfriend of a 911 dispatcher and an online student attending Eastern New Mexico University. I currently hold Jr status, got two more years of college and I cannot wait to graduate!
Who are you caring for? What is your caregiving story?
I was caring for my boyfriend’s grandmother. When I met her for the first time, her usual caregiver was fixing to move out of town. When that happened, she kept going through caregivers and none of them seemed to survive nor get along with her. I was recently out of a job– the daycare I worked for became strapped for cash and I was let go for reasons that were not known to me. After not having a job for months my boyfriend pitched to me the job of helping out his grandmother, someone who he also considered his mother. She was very close to him and she practically raised him off and on; they had a very close bond that I wished for.
About one to two weeks later, after going through training, I started my first day as her caregiver. I can admit it was hard, she yelled at me for so many simple mistakes that I kept making, but I told myself I needed this job. I could not lose this job. I was 20 at the time and losing my calm, I could understand she was in a lot of pain and she was sick. She needed my help. I could not let her down, especially since her “son” was my boyfriend and I wanted to make him proud too–so I stuck it out.
The company that I worked for wanted me to see other clients, but his grandmother insisted that I stay with her because I was unfamiliar with the town she lived in and knew no-one. As time went by, I made less mistakes and got my job done and our relationship improved. When I was done with everything, I sat with her and talked with her and she shared stories of her grandkids (my boyfriend and his brothers). I shared stories of my life and what I’ve been through and I began to think of her as the grandmother I never had. She often told me hints about my boyfriend and wanted to teach me so many tricks that he liked. Recipes that she made, she wanted me to have, but she never got the chance to.
Her health declined about a half a year into me working for her and she soon lost the use of her legs due to an ongoing illness. I am a “small large person” you could say, as I am plus-size but I am small and so I could not lift her to help her at all. I soon was transitioned out of the job, which was given to another person who could be there more than I could be.
I often stopped by with my boyfriend and talked with her, and she often asked if I could stay the night with her. I declined almost every time, which is one of the things I feel the most guilt about. Don’t get me wrong; she had family that loved her and stopped by on occasion, but it was seldom she wanted company and that’s all she wanted. She was a homebound person most of the time, due to her blindness and the illness with her legs. She lived alone, my boyfriend had moved out and gotten a place with me, so when he was gone, she lived alone. That is the one thing that keeps going through my mind now.
Once her health declined we did not know that would be the last few months we would have with her. She was transferred to an out-of-state hospital and soon after that she passed away. I had plans to surprise her that weekend by traveling up with my mother to see her. About five days before I was supposed to leave we all got that dreaded phone call early on Saturday morning, and she was gone…she gave up the fight that none of us thought she would give up. Coming back to it I feel a lot of guilt for not staying over and keeping her company. That’s all she wanted was someone there to pass the time.
The funeral came and went, I showed my true spirit. I couldn’t stop crying about it; I kept thinking about everything she taught me, everything she told me that still rings true today. The one lesson she always told me was no matter what is going on in your life always keep your head up and smile because nothing is bad forever.
What do you wish you were told before you became a caregiver?
This one seems easier: you are going to need a lot of patience and a lot of self-control not to get angry and fight.
What advice would you give to other caregivers?
Don’t over think everything, don’t take things literally because sometimes things are said out of anger and sometimes pain. I remember her getting very angry at me because I touched something that hurt, I cried because it broke me, but about five minutes later she said sorry and gave me a tissue.
What’s been the hardest part of caregiving for you?
When she passed away, it was getting used to the fact that she wouldn’t be around anymore. She wouldn’t call me to ask me the “gossip” of the day, or blow up my cell phone asking me how my day was going on my day off. It hurt to know this.
What’s the most rewarding part of caregiving?
Having the person you are caring for happy, and in a good mood because they are cared for.
What’s the best tool or strategy you’ve found to help you with caregiving?
Being patient; enough said.
In ten words or less, what has caregiving taught you?
It has taught me patience and understanding of someone’s life and health.
You can learn more about Bianca on her blog.
Who is a caregiver?
Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.
I’m a parent, grandmother, dog lover, antique fan, music lover, and a person who genuinely cares for people and would love to be able to take away all of life’s suffering. I care for a retired female veteran. Before becoming a caregiver I didn’t realize how consuming it would be…both of my time and myself.
Sandy and her son
My advice for other caregivers would be to take life one day at a time, one opportunity at a time. Don’t take anything personal. It’s easier said than done, but possible. The hardest part of caregiving has been not having time for myself and my family. The most rewarding part is knowing I’m helping someone have a better life. The things that matter most to me are other’s happiness, my family, health and well being.
Caregiving has taught me understanding, appreciation, acceptance, thoughtfulness, and selflessness. It’s an honorable thing to be a caregiver. I’m making a different in people’s lives.
Who is a caregiver?
Nearly 1/3 of Americans serve as family caregivers and millions more serve as paid professional caregivers. The Caregiver Space is sharing their stories.
I’m 44 and engaged to the love of my life! Mom to one daughter. I love life in the slow lane, watching the snow fall, the river flow past, and lightning storms. An animal lover since birth, I am astounded by the amount of cruelty people can show; to both animals, and humans. I love to curl up with a great book, and could read all day. Not a coffee drinker, I’m a certified Pepsi-holic, and chocolate lover, I love home made buttery popcorn! I battle with depression almost always.
Besides being a caregiver, I’m a crazy cat lady, dog lover, hunter, fisherman, Mom, artist, cook, reader, doctor, nurse, patient.
I work at an assisted living center for the mentally ill. Our residents are the worst of the worst. The ones that would otherwise be in jail, or in a state hospital. They have burned their bridges. I started working there after ending an unhappy, abusive marriage. I moved close to home, to be near my family; And I found another. So far, I have been there for 12 years. It’s had some really rough moments, and some I would not trade for the world. Every day is different. Bi-polar, borderline personality disorder, TBI, Dissociative Identity Disorder, paranoid schizophrenic, fetal alcohol syndrome, Hunningtons, Downs, Williams Syndrome, Klinefelters, dementia, Autism, sex offenders, and so many more that I cannot recall off of the top of my head.
I wish someone had told me to never take it personal. These people get frustrated, and angry, and they come up with some really creative profanities to call us. But, it’s not personal. It’s them, getting rid of anger, and frustration, They have no positive ways to do it, not in their heads. I wish I had been told how much of this you are going to carry around with you. Every day. No matter if you are at work, or at home. You don’t get away from it, just because you go home.
Caregiving is going to hurt. You will get close to the people you care for. And when they go… wether it be to a different place, or death claims them. It’s going to rip your heart out. The residents we care for will treat you like you are their best friend and stab you in the back. It’s not personal. Also, find a hobby. Wether it be reading, crocheting, making flies, crosswords, you need something that’s basically mindless… to let your mind slow down.
What’s the hardest part of caregiving for? Physically? The stress. The rest? Oh geezze.. I would have to say the worst part? Its a tie. A tie between holding a man’s hand while he is dying. When he doesn’t let go of you, even though they are loading him in an ambulance. Knowing that is the last moment you have with someone you have spent so much of their life with. A tie between that and having to have a resident removed from the facility, to go to jail, or a state hospital. Knowing that we weren’t helping that person. Knowing that they will end up in a place where no one will know them. A place that isn’t home to them.
The most rewarding part? Having someone with no family, or the family has written them off, come to you, and tell you how much they appreciate something you did. How much it meant to them. It’s a humbling experience. On days when I just don’t think I can do it for one more minute… those are the moments that keep me there. Knowing you are making a difference in someones life.
One of the strategies that makes caregiving easier is to never yell. If two people are yelling, no one is listening. Speak quietly, and listen to what that resident is saying. Really hear it. Sometimes its okay to walk away. If you feel like you need a moment, take it. Never take anything personal.
Caregiving has taught me to cherish each day. Patience. Empathy. Love.
As I write this today, I still feel like I’m writing someone else’s story. I’ll call it, “Health Care Worker suddenly becomes Primary Care Giver.”
We all relate to hearing stories about someone with sciatica. Well, for 2 months my hubby worked with it, knowing he’d likely need time off if it was going to be a long time until it resided.
One day, the pain became excruciating after working all day. We went to our trusted massage pain doctor. He informed us he’d be calling an ambulance if we didn’t take ourselves to the ER and that my hubby would need emergent surgery.
We were shocked to hear that. We didn’t even have our coats with us or our affairs in order back home, yet we were rushed to Toronto, as they explained to us that a spinal compression was causing the weakness and onset of paralysis. They had a short window of time to minimize nerve damage, but that window had long passed as he had worked for weeks with the pain.
Since that weekend I’ve been his primary caregiver. He has permanent bowel and bladder paralysis, and is at risk of falls (and has already had a few), and he also now has foot drop, not to mention constant nerve pain and exhaustion. Depression set in autonomically because of the signals being messed up, and also because he’s 42 and forced into not being able to work.
He also has autonomic dysfunction and has had a few scary attacks. His blood pressure is a problem, as well as his passing out at times.
We’ve had little support, if any, from doctors here. We’ve just had visits to the neurologist in Toronto.
I’ve had no help. As primary caregiver, I can’t work very long as I’m needed at home. There are many tests still to come, as well as rehab sessions in order to learn to function with what’s left after Spinal Injury. So, I’m caregiver at home and not in the community any longer.
Like hubby, as we go through this together I, too, feel less than useful at times, but somehow it’s where I need to be. I feel empathy for anyone going through disability, especially an invisible one as there is so much judgement to face and little financial help offered. One day you’re working and have sciatica, or so you thought. Then, voila! You’re two days from the wheelchair but can luckily still walk, though only slowly, carefully and painfully. Invisible paralysis has set in.
Even the doctors don’t know a lot about Cauda Equina Syndrome.
I don’t quite absorb what the tests will do, as there is no cure for spinal injury.
We’re hopeful that someday they will find a way to regenerate damaged nerves.
And we are thankful for every day without an attack of autonomic dysfunction, and for family. We educate friends who have sciatica. If you experience numbness or paralysis do all in your power to make someone listen to you. The spinal canal is your whole nerve system. If the root nerves are damaged, that will affect everything. Even sleep dysfunction is common.
Be an advocate for your own health. Continue to make doctors and loved ones listen to you during your sciatica recovery so that no stone goes unturned. It is life changing. I’ve seen this throughout my hubby’s struggle with disability and depression. There’s an element of grief that comes with the sudden loss of friends, loss of independence, loss of thoughts and dreams for the future, loss of security, etc.
Thanks for listening.
People are curious as they don’t often know about this issue. Many don’t believe it could happen to them. I’m here to say that if your disc ruptures into your spinal canal, it’s that quick and can happen to anyone.
by Brenda Bondy-Caldicott
Today seems like it will never end.
Its sweltering in here. The heat and the urine smell at this retirement home job is making me feel ill. I’ve been suffering from Insomnia from worrying about the lack of pay. Will I have enough to buy the groceries I need? With five jobs, I should be able to meet my basic needs, barely. That’s how the fourth and the fifth job happened – the first three weren’t enough.
Robert has remembered his parents are passed on. He has these delayed grief reactions out of the blue. We repeat what his P.O.A tells him, to orientate him to time and place. However, it leaves us in a spot. There’s no Mental Health Nurse or anything to address his utter grief. Robert is inconsolable. We complete his H.S. care and spend extra time with him, reassuring him we are still here, his family. This is where he lives now. We remind him that his parents had passed on some 15 years prior. Robert is 60 years old, but he acts like he’s 8. He wants his mother and father. We suspect underlying mental health issues made worse by his dementia.
Then onto Sadie’s room.
She’s 65 and has Schizophrenia. I’m thinking to myself I wish I had my Mental Health Practitioner Certification done, but had to stop school as I couldn’t afford the $335 every semester. Or I’d be likely doing that now on the side too. The care we provide in this retirement home is all geared toward meeting physical needs: personal care, bathing, assistance with dressing. There’s nothing in the Care Plan for companionship to validate their emotional needs or mental health concerns. Sadie is frantic, stating she heard voices speaking in Spanish that they were coming to kill her tonight. She’s also certain a man visited her, as 3 buttons were down on her pajama top. I explain that sometimes if we’re too warm we do things subconsciously while we sleep. She is not convinced by my explanation and grows so frantic we’re debate calling 911. Both for her safety and our own, as she explains to us how she would protect herself in her room.
Leesha is a new resident that moved in yesterday, so I don’t know anything like how she is with people. She is 30 and 8 months pregnant. She’s living in this retirement home to escape homelessness. She is also a drug addict, has schizophrenia, and is obsessed about dead children. I notice a strong smell of urine from her room like she hasn’t had a bath or changed clothes for a month. She refuses personal care assistance from us, so we gently encourage her to use the shower. Her room is littered with Styrofoam cups filled with cigarette butts. With the rules set in place, we can do nothing but report it to the R.N. if she refuses to cooperate. There woman in the next room is on oxygen, so we have to take this seriously. If she’s caught again she will be evicted or put in the mental health unit until the baby is born. Then she will be homeless again.
Tonight we’re short staffed, so I bring John his tea and cookies at snack time. He informs us he has learned that he has throat cancer. He says it so matter of factly that I’m taken aback. He’s more concerned how we’ve been and whats new. He’s just recovering from hernia surgery, but he’s in good spirits. The resolve of some people never stops amazing me.
The day that I felt would never end and five hours later I’m heading home – physically, emotionally spent…again. This what I’ve heard them call burnout.
Ava has shared her experience as a professional caregiver with The Caregiver Space before. To see her first post click here. Ava is a caregiver for C, a woman with Alzheimer’s who lives with her daughter.
How has C been this past week?
Ava: I’ve noticed that C has more stamina and is getting stronger. Lately, I’ve been putting a lot of emphasis on getting her outside and walking around—if she’s up to it. I feel good about that. We have great times together—I try to make her laugh as much as possible. We’ll be talking about pleasant things and sometimes topics come up that I turn to jokes and a little harmless gossip helps her engage. I treat her as a friend. It brings me joy to know she wants me to stay all of the time.
How did you prepare for life as a caregiver?
A: I feel I was raised to be good caregiver. In Hungary, when I was growing up, families lived together with the elderly. Back then families took care of each other and the generations got used to one another. Our grandparents took care of us when we were younger so we take care of them as we get older.
With C, I try and respect her privacy as much as possible. If she wants to be alone in the bathroom, who’s to blame her. I just see myself at that age and I completely understand, I wouldn’t want anyone else in there. If she wants me to go in and help her I will and she almost always does. I stay at the door so I can hear her and stay in communication with her, ask her how she’s doing. It makes her feel better to have that little bit of independence. It helps with a general sense of well-being because I think the emotional toll of being treated as completely dependent can hurt the recovery process.
What helps make you a good caregiver?
A: The key to my caregiving journey is empathy—over the years it has gotten stronger and more significant in my life. When I was a child I saw my mother reacting empathetically to circumstances and I felt the same way but in school and in other environments I didn’t see that same level of empathy. There was much less. But since I’m getting older it’s more significant because I know I can make more of a difference with empathy. I am in touch with myself more and my experience—that helps me to grow. Empathy is important in caregiving. I try to make a distinction between my ego and what is best for my patient. I had to develop patience and not just react immediately to what is around me. In that way, self-knowledge protects us.
Anything exciting coming up for you?
A: Yes, actually! The next time I perform at a concert I’m planning to pick C up and take her since we both share a love of classical music. That will give her daughter the night off and something C will enjoy very much.
The Caregiver Space sat down with Ava T. to hear her remarkable story as a professional and family caregiver.
Ava took her first step towards her role as caregiver when she attended nursing school at age 15 in Hungary. She chose nursing in accordance with her humanitarian nature. When she was 16 years old she was sent to assist the nurses in a hospital’s hospice and palliative ward, which was crowded and understaffed. Due to a lack of funding and care, the elderly in the ward were just waiting to die; few had relatives and most were in serious condition. Eva found herself taking on enormous caregiving responsibilities at a young age. Upon graduating from nursing school she went on to pursue studies in her true passion – opera.
Her caregiving career resumed at age 34. In Hungary, as her grandmother got older, Ava helped her mother with caregiving responsibilities. In America, she found work as a caregiver for a friend’s mother-in-law who suffered from lymphoma. The patient had been told she had about eight months left to live, so Ava maintained the household and made the patient as comfortable as possible. Soon after that caregiving experience had ended, her current journey began. C.* is her new care-recipient: 91 years old and affected by Alzheimer’s. C.’s daughter lives with her but works full time so she and Ava split the care. A neighbor watches C. in between care-shifts. Upon arriving at 8:30 a.m., Ava makes breakfast, and afterwards she takes C. out to the park or grocery shopping, weather permitting. Otherwise, the two watch old movies and listen to classical music, a shared interest. She prepares lunch and dinner before leaving at 6:30 p.m. when C.’s daughter arrives home, taking the next shift.
Ava has found this caregiving role to be particularly stressful when her patient gets upset or frustrated. This is common for people living with Alzheimer’s.
When it comes to Alzheimer’s patients, they get agitated and they’ll have an angry outburst. But that’s the disease.
When these situations arise, Ava comforts C. and reassures her that everything is okay. “Compassion is very important because I have to imagine myself in her shoes. C. loses the ground from under her feet so I remind her that she is home and her family is nearby.” She immediately knows how to calm her patient when C. gets upset. In one example she gave, C. became concerned about her surroundings so the two took a walk around the apartment to get some exercise and become re-accustomed to the environment. It is this type of care that comes instinctively to Ava.
As stressful as a caregiver’s life can be, it can also be immensely rewarding.
It’s a great challenge for me because I must figure out what she needs. That’s my number one goal and I try to keep that in mind.
At first C. was weary of a new presence in her life, but now she lights up when she knows Ava is coming. It is the subtle emotional support that caregivers provide that really highlight the importance of the role.
Every caregiver, regardless of capacity, must take time for self-care. When life feels overwhelming, self-care is often the first thing to be sacrificed but it is crucial to maintain a balanced way of living. “My grandma used to say to count to ten before you act.” This is important advice for caregivers who find themselves at their breaking point. “Meditation and breathing help me relax and I sleep better.” Ava is also using a new method of breathing that stimulates the vagus nerve (a nerve originating in the brain that communicates with the body’s central nervous system). When stimulated, the nerve effects the whole body and the user gets an immediate sense of calm and relief. The nerve is located by the vocal chords and is also stimulated by singing. Discovered, of course, by the woman who loves opera!
Read part 2 and part 3 of Ava’s story.