Is This Adequate Basic Care?

herbieandme
Sep 8, 2020
19 min read

Updated: May 25, 2021

“Trust is choosing to make something important to you vulnerable to the actions of someone else.”

- Charles Feldman

Our journey into the system of long-term care all began with trust, excitement, hope, and great relief.

Entrusting the person who has been the most consistent, supporting, trusting, kind, thoughtful, and loving parent and protector to be cared for within a facility is a vulnerable and courageous journey. Even before Covid-19, I had concerns.

Have you ever considered what your basic care needs might be? What basic care needs would you want met and feel are adequate? When you have to decide that for a senior, it's tricky to balance, as care needs tend to increase as seniors are less able to care for themselves. Yet, this is a very important consideration to examine ― expectations: What is OK? What is not OK?

I had the following expectations of basic care. Were they Reasonable? Unreasonable?

WHAT'S OK AND WHAT'S NOT OK

The journey advocating for a senior loved one rumbles with trust, boundaries, reliability, consistency, accountability, and integrity. I've never put so much effort into something in my life, in trying to provide hygiene consistency, care plan consistency, medication adherence, cognitive stimulation and a quality of life for my father in a forever changing environment. There has been so much inconsistency with care aides – so many new faces over the years with varying degrees of care practices and skills and a real problem with not enough staff and not enough eyes overseeing the whole situation. It's been heartbreaking and exasperating to witness the inconsistencies of staff and their varying levels of care practices negatively impacting my father – heartbreaking and exasperating because so much of it is preventable. It requires courage I never thought I had, but it is exhausting. Not having had experience within a long-term care system environment, I found myself in the school of hard knocks trying to decipher what's OK and what's not OK.

My 94-year-old father is vulnerable. Because of his dementia, he is unable to ask for help or push a call button and is completely reliant on care aides for his physical needs, comfort, and safety. With the care aide staffing and care practices being inconsistent, plus there appears to be no oversight or accountability, where is the boundary of what is acceptable and what is not?

ADVOCATING TO PROTECT

MEDICATING

Trazodone is a prescription medication approved as an antidepressant, but more commonly used as an off-label sleep aid. My father was prescribed Trazodone “as needed" in April 2017 without my being consulted, informed, or giving consent. Our discovery and research into the amount of Trazodone given to my father revealed that between April 26 and May 31, 2017 he was given three doses. In June 2017, the amount of Trazodone given spiked alarmingly to nine doses, and in July 2017, 15 doses! The "as needed" prescription looked to be more routinely given. Why was the alarming spike not overseen or questioned?

I feel that medicating a loved one with antipsychotics or antidepressants should not be undertaken without prior conversation with the designated decision maker. Also, I feel strongly that the conversation should be with a doctor or a nurse practitioner. This is a very sensitive topic as these drugs have very serious side effects and risks for our seniors. Some have Black Box warnings (which is the FDA’s most stringent warning for drugs. Black box warnings, or boxed warnings, alert the public and health care providers to serious side effects or serious safety risks. Often these warnings communicate potential rare but dangerous side effects, or they may be used to communicate important instructions for safe use of the drug). I believe there needs to be better oversight and governance protecting our seniors. This issue needs to be a part of the Canada Health Act with national standards, oversight, and governance. I've written an entire blog on medicating that you are welcome to read under the heading Medicating - Is 'As Needed' Being Overused? The medicating of my father without my being informed or consulted is not OK.

We need to engage in conversations with each other, even if we don’t agree. Medicating without consent from the designated decision maker is NOT OK.

FALLS - NOT OK

Sept. 17, 2017 letter

"This morning we received a call from the RN at the facility. She informed us that my father was found on his knees at approximately 7:20am, he appeared to have fallen. Our concern is that nobody knows how long he was out of bed and on his knees. By the looks of his knees, he has been on his knees a long time (I’ve attached a photo). Apparently the bed sensor is not working and the bathroom sensor has been disabled. The staff is looking into why the bed sensor is not working, but the green light is on. Could you ensure that the bed sensor ‘working’, is a priority?"

My father is struggling with his mobility at the moment and he is still aware of when he has to go to the bathroom and will try to go on his own and we don’t feel that disabling the bathroom/bedroom sensors, that could potentially alert staff, is a wise thing to do at this time.

Why would sensors be disabled at night? I find this concerning.

Falls are a big deal – my father has fallen out of his wheelchair a couple of times. Both of those times he was found in the dining room, with no witnesses and no one attending him. With the last fall, the resulting big goose egg and gash on his head, along with a three-inch-long forearm cut, were very concerning for me – I am familiar with how serious an impact to the head can be and was concerned about a concussion.

When I enquired, I was told that my father was found on the floor and told that sometimes he takes off his seatbelt. Yes, sometimes he does. Having said this, my husband and I have also witnessed the fastening of the seatbelt forgotten by staff.

Both falls out of his wheelchair happened mid-morning. I asked about staff breaks around that time being a possible concern for risk and advocated that my father being left alone in the dining room unattended is a risk we want to avoid.

ADVOCATING FOR ADEQUATE CARE - is this what is accepted as adequate basic care?

I believe proper practices of toileting and skincare need to be regulated with oversight and accountability. Skincare is the second biggest issue of concern for me, medicating being my #1. The lack of proper and consistent skincare has been an ongoing concern, my greatest fear being the risk of sepsis.

The condition of my father's skin on December 10, 2017 disturbed me so much I started paying close attention to his skincare and why this was happening.

SKIN CARE CONCERNS

My multiple letters/emails writing with repeated concerns:

December 20, 2017 email

"I’m wondering if we can meet to discuss my father's skin not healing? I’m concerned that this is not getting better, that this is at risk of getting infected. My father is EXTREMELY SENSITIVE to both medication and product on his skin. I respectfully do not agree with some of the decisions made recently regarding the treatment of this issue and my father's skin dryness, causing the itching. I appreciate being a part of finding a solution that best serves my father's care & healing."

February 19, 2018 email

"It's still important that he gets toileted and urine wiped off his skin at 4pm, for the continuing healing of his bum skin."

August 20, 2018 email

"I was in to see dad in the evening. At 7:38pm I noticed dad's Depends being heavy and very soaked, soaked through into his pants. Dad’s scrotum was itchy and he was very uncomfortable. I asked care giver if dad had had his mid-day change? The care giver said ’no’ he hadn’t changed my father because my father refused. I tried to summon empathy for how a scrotum might feel after a day in urine, and the care giver cut me off and said they weren't going to force my father. My answer to the care giver was that I felt that dad sitting in urine all day didn’t feel right to me and that I am to be called when dad refuses."

August 27, 2018 email

Observation and concern: "a care aide was cleaning dad’s privates & bum for bedtime and I noticed he used the same gloves when cleaning dad’s privates to also apply the creams to dad’s skin. I mentioned that some caregivers wear double-rubber gloves and after they are finished cleaning private and bum areas, they slide off a set of gloves & dispose and apply the creams with the clean pair of gloves. The care aide seemed to dismiss what I had shared as this person continued to apply the cream with the bum-cleaning gloves."

October 22, 2018 email

• "I’m concerned about my father's skin health on his bottom, the skin health has deteriorated from the last time we spoke on this issue. The skin is showing signs of the start of breaking down and is dry."

• "We do not wish my father’s skin to break down…... or becomes a condition that creates unnecessary discomfort/suffering or risk of infection."

October 24th, 2018 email

• "we are getting concerned with his present skin health state and do not wish for it to get worse."

• "The night to morning hours is the time his bed can be wet and he could have been lying in urine for hours longer than his skin can tolerate."

• "A skin Doctor and two nurses have cautioned me to look after his skin as this appears to be the beginning of skin breakdown and that moisturizing and a barrier cream will do wonders, so long as my father isn’t sitting in urine for long hours and the urine is being washed off his skin during changing. Prevention is key."

• "concern that my father was in a diaper too long and not being changed mid-day by some care givers. The changes happen between 4 - 4:30pm or not until his bedtime of 8pm. Which, if dad is toiletted and cleaned in the morning at 8:30am - 9:30am, means he has been in the same diaper 7.5 - 11 hours wearing the same diaper, resulting in very itchy skin and unnecessary suffering. I was simply asking to work out a mid-day cleaning/change around our visits and shift changes. It seems so difficult to get a meeting-of-the-minds and understanding on this."

• "His skin was burning with irritation and itch. We are concerned, so we started to come daily to change him around 3pm, because we love him and didn’t want unnecessary suffering or risk to his skin health to happen."

Questions asked:

• "What toiletting is done for my father between 8:30pm - 11:30am?"

• "We are seeing diaper doubling-up in the morning and have noticed the grey pull-up we provide being used up. How long has doubling-up been happening and could this have affected my father's skin health?"

• "Is his skin cleaned when changed? Are creams applied then?"

• "Why are toileting, cleaning of skin and diaper changes not recorded? How do you monitor accountability around skin care health and prevent a resident from sitting for long hours in urine? Can you explain to me your standards of practice around toileting and skin care?"

November 05, 2018 meeting

Shared my observations:

• Skin heath seemed reflective of the care person

• Whether toileting happened around 4pm or not until 8pm; means my father is in one diaper 7 - 11.5 hours, that is too long

• Whether creams are used or not

• Whether skin was cleaned or not

Questions asked:

• How long does the facility consider it to be 'too long' for a resident to be in the same diaper?

• Why are diaper changes not noted?

• How does the facility monitor for accountability and oversight around skin health and the hours left in the same diaper?

2019 - Sometime around the beginning of 2019 my husband and I discussed my father's skincare as it wasn't improving. This was not OK. We decided to test consistency with toileting, the cleaning and care of my father’s skin to see what we would learn. In 2019 we did almost all the noontime toileting and many of the 4pm and bedtime shifts. We learned a lot, see Annual Care Conference notes below.

May 03, 2019 email

"Itchy Skin has returned on Herbie’s back (he hasn’t complained of itchy skin in many months). He was very wet on one morning, found lying in wet pee bed. If dad doesn’t get changed midway in the night, his skin becomes itchy due to urine burning his skin through the night to morning."

August 23, 2019 email

"I’ve written before regarding dad’s sensitivity to urine against his skin too long (6 hours and longer) and concerns with skin breakdown. We are seeing signs of irritation that is not improving: photo taken yesterday at noon. We have noticed the signs of dad scratching again and red irritation markings, indicating symptoms of urine irritation.

We have seen these markings appear after we have put him to bed at 8pm, the next afternoon at 12:30pm when we toilet him. What has changed in the night Care Plan over the past 3 evenings that is creating this irritation and itchiness? I would appreciate this not getting worse with whatever change has occurred."

October 09, 2019 email

"Last night when we tucked dad into bed, this wasn’t there." We believe this RED inflamed mark on my father's skin is overnight urine contact - this mark took 5 days to clear.

Annual Care Conference notes:

January 16, 2020

In the five minutes I am allotted to ask questions or discuss my father, I shared my concerns and my 2019 discoveries of our care. They are as follows:

CONCERNS:

“The harm that can be caused to the skin by urine has never been acknowledged from the facility’s Team. The reasonings of his skin condition from the Team made no sense to me, at times, so I took my concern outside of the facility to discuss with a nurse and a skin doctor. They looked over the photos I presented and felt the skin appeared to be the start of skin breakdown. They suggested things for me to do to repair Dad’s skin and encouraged me not to let it get worse as all sorts of problems could arise.”

“It was heartbreaking to see the skin on Dad’s buttocks look so bad, and to witness the pain that a burning scrotum causes him, seeing boil-looking sores, smelling the sour smell around his groin area when his diaper was clean. This, to us, indicates that he was not being properly washed before a new diaper was put on.”

“Dad kept scratching his skin saying it was ‘itchy witchy”. His skin was all scratched up on his back, arms, and backside from the itching. The itch was so bad that my husband and I and the Care Aids were putting gloves on dad hands at night to keep him from scratching and I kept his fingernails as short as possible to keep the damage to a minimum.”

“Dec. 2018 I noticed dad’s bed was wet with urine when I went to put dad to bed. His bed hadn’t been cleaned & changed. I called the nurse and she and I cleaned & changed the bed. But this got me thinking ‘could this be why dad’s skin is so itchy?’. I started to pay attention to the bedding.”

“If my father could advocate for himself, he would not endure this or find this acceptable.”

“Sometime around the top of 2019 my husband & I discussed the whole situation and decided to step-up and do the toileting and cleaning of my father’s skin and what a teaching and loving journey it has been.”

DISCOVERIES:

• "A very strong sour urine smell around his groin area when Dad’s wearing a clean diaper when we sit him down on the toilet over the noon hour, tells a story." - We suspect groin area was not washed.

• "We learned that dad has a BM 27 - 50% of the time after lunch. By toileting him at 12:30pm, there was not one incident in 2019 of our arriving at 3pm, after his nap, to find dad, or his bed and bed rail smeared in excrement."

• "We spent the early part of 2019 trying various baby creams and one nourishing oil, to discover that the Burt’s Bee’s Nourishing oil is amazing! Dad’s skin began to heal with consistent cleaning and application of the oil during the day and an added barrier cream at night. Dad’s skin looks pretty good these days." The photos below are not altered in any way. The Burt's Bees Baby nourishing oil on my father's skin added a sheer to the skin that the camera seemed to have difficulty capturing with clarity, but the difference is still clear.

• "With time on the toilet at 12:30 and 4pm, we discovered a DRY diaper at bedtime most evenings. This means that dad's skin was clean and dry for 7 hours."

• "Lastly, there were no boil-like sores around my father’s groin in 2019."

• "My husband & I put Dad to bed most nights in 2019 and I kept a close eye and nose on the condition and smell of his bed. If it smelled, I cleaned and changed it. The itching cleared and dad no longer needs to wear gloves at night. This, too, tells a story."

"It’s been one amazing learning year. We are very grateful for the Care Aids who traveled the journey with us and worked alongside us, mutually sharing tips to give my father the best care. Dad’s happy."

"I would like a voice on issues concerning my father, a voice in his care plan and to be consulted and informed of prescribed medications. No one person has spent more time with him or knows him better than my husband & I do. I’m tired of feeling there is no time for family when our experience clearly shows how important input from family can be."

— Herbie's daughter

In 2019 we discovered that carefully washing and cleaning the private areas and applying creams took my husband and me 10 to 15 minutes each time — a worthwhile investment of time as it created such positive results. We believe the most positive direct care impact for my father was consistency with toileting, cleaning, and moisturizing.

January 22, 2020 meeting

• I read the notes that I had prepared for the Annual Care Conference re: our 2019 discoveries.

• Another resident family member and I shared our concerns that we believe skin is not being washed between changes at times. We have noticed a clean diaper, but the skin smelled strongly of urine, or dirty with ‘poo’ smearing the skin and clothes.

I have additional points of care around toileting and skincare health that have shown improvement in the 'Care & Caring' blog. I repeat: we believe attention to skincare health through improved skincare practices needs to be regulated with oversight and accountability. This is an area of care that creates unnecessary aggravation and pain and puts our loved ones at risk of infections, and that is not OK.

WET OR UNCLEAN BED CONCERNS

• My father has been 'very itchy' since 2017. We now believe it was due, in part, to his skin being exposed to urine too long or not being cleaned off well. Also, we believe my father is sensitive to the product that the facility uses to help relieve skin irritation due to incontinence (his skin seemed to get worse). We would find his pillows stained with urine or still damp, his sheets damp or dry but smelling strongly of urine, the bed with poo smears and my father's bed remade. Once we insured Dad was sleeping in a clean dry bed and his skin was thoroughly washed and moisturized, itching was no longer a problem from mid-2019 to January 2020. It is not OK that my father is put to bed in a wet or unclean bed.

· My father gets a shower once a week.

· My father’s bed is changed once a week, unless soiled – at the discretion of the care aide.

'POO' ON FINGERS - NOT OK

September 01, 2018 email

"Please find photo of my father's fingers Monday Aug. 27th, 2018. Deep concern as my father had poo on his fingers over the dinner hour: as he often eats with his fingers."

May 12, 2019 emaiI

"Several times since January dad’s sheets had poo smears; the bed was re-made in the morning with poo smears in bedding. There was no one available to come. The poo was on his fingers at lunch. Therefore, dad most likely ate his lunch and breakfast with poo on his fingers. I washed it off his fingers and cleaned his poo smelling mouth and his hair. When I tried to get a care aide to come see. The care aide didn’t come see."

RUSHING CONCERNS

Feeding

It is difficult to express in words how gut-wrenching it is to watch a care aide rushing my father to eat. My father has no back molars to chew food. He needs time to chew with his front teeth. He has stomach challenges that require slow eating, and his dementia is causing him texture issues with food that create choking. I've been instructed by the dietician to encourage my father to eat slowly, so when I see the care aide putting a new fork or spoonful of food into my father's mouth when he's barely swallowed his last bite, I am very distressed and I want to protect him — not OK.

Why does it appear that meals are being rushed so that care aides can move on to their dishwashing duties? Why are care aides doing dishes anyway? Why can't care aides take their time when feeding? Is management perhaps not giving them enough time to perform their important work of feeding residents before they have to turn to washing dishes?

Care Aides: Rushing vs Unhurried, an observation

• November 22, 2017 letter

"A hurried caregiver: my husband & I have both witnessed a caregiver care for Dad in a hurried way: pulling and pushing at dad’s walker to get dad moving quicker. Dad is 92 yrs. old. He does nothing quickly and needs time for his brain to process instructions. I have observed when the care aids take their time and care for Dad in a gentle way, he understands and is able and willing to follow their instructions. This results in less effort or stress for the caregiver as well as Dad. Rushing causes my poor father to struggle with understanding and to be confused. I am very concerned and worry for Dad's safety with rushing. Dad is at his most vulnerable and fragile time of his life and it’s important that the care giver understands he does not move fast and needs time to process instructions. I cannot emphasize this enough."

• September 06, 2018 meeting

Concern for a caregiver having a "RUSHing energy and enters the room with HURRY energy. My father is in no way able to meet rushing or hurry. There are caregivers with gentle and unrushing energy that are able to get my father moving quickly. Rushing or hurried energy causes stress or resistance to do what is being asked."

THE HANDLING OF MY FATHER'S BODY

Nov. 22, 2017 letter

• Right arm pain

"Nov. 12th was the first time we noticed dad’s right arm causing him pain. On Nov. 15th, I shared my concerns with nurse that I would like to encourage dad to walk, but am concerned by his being pulled up or held up under his arm, causing his shoulder to hurt. Dad has been active all his life and I would like to encourage his ability to remain active, if he's willing; it’s good for his body and his mind. I have purchased a belt from the Medical Supply store, similar to that used at the facility, so that I can help lift & support my father as he walks, sits, and gets up. The nurse would have OT assess the lift & support belt for approval for care staff to use."

• Protecting knees

"Dad has hairline fractures in his knees that give him pain, this is the reason It is very important his legs are handled in a way not to stress his knees. I recently witnessed a new caregiver trying to get Dad’s legs into bed by pulling his feet up and onto the bed. Dad’s body position was twisted and stress obviously put on his the knees. I cannot emphasize enough, and I have mentioned it before, that there must be caution used with Dad's knees. This was on the care plan and was removed. It must be part of his care plan; I do not want my father being unable to walk because his knees have been mishandled, due to a care aid not being informed."

• Protecting neck

"Dad had a fall off a two-story balcony and came very close to severing his spine at the cervical vertebrae. Care aids need to be mindful when moving my Dad not to cause strain on his neck. I’ve noticed Dad asking care aids and myself to be careful when handling him in bed, when trying to roll him over, or get him in & out of bed. He asks that we be careful and not so fast. At first it seemed like a reasonable request, but I’m now feeling that dad is afraid when being handled. There is a possibility that being handled in a certain way causes him pain, and he now fears the pain. Thus, he’s asking that we be careful and not go too fast when handling him. I’ve also noticed him holding the back of his head, which is where he had pain for years. I bought him a pillow to help support his neck when he sits, it seems to support & give him comfort. I do not want his neck area strained and the old pain to return."

I am always worried about the handling of my father body as he's had such serious accidents and when he is handled incorrectly, it hurts him.

A PEOPLE CHOICE

in·dif·fer·ence /inˈdif(ə)rənce noun: indifference, lack of interest, concern, or empathy

I believe there are systemic problems with adequate staffing, consistency of staff, consistency with care standards and practices, a lack of accountability and oversight, and a lack of funding. Having said this, systems are made up of people and it is people that choose:

• to wash and clean the skin, or not to wash and clean the skin

• to change soiled bedding and pillows, or not

• to offer water and help with hydration, or not

• to correctly insert my father's hearing aids, or not

• to make my father comfortable in his chair, or to leave him slouched in the chair with his feet dangling over the edge and his tailbone set in the middle of his cushion rather than at the back of his chair

This is A PEOPLE CHOICE!

There is a proverb: not to know is bad, not to want to know is worse.

There have been so many new faces caring for my father throughout the years. Some, I felt were really good (and I am deeply grateful to these care aides!); some seemed to be coasting in between jobs; some were trying but needed improvement; and some had simply answered the wrong calling professionally. It did appear to me that care standards and practices varied widely. I thought bringing awareness to the issues would be helpful to the facility as it seemed that maintaining a certain quality of care was valued; but my concerns felt more unwelcome than welcomed. When bringing forward issues of concern to the care aides, some were gracious and helped immediately, but they were the exception. Overall there appeared to be no concerns expressed about the issues brought forward in this blog.

IT IS THE PEOPLE THAT MAKE THE CHOICE NOT TO SEE.

Have our seniors disappeared off the radar of who we naturally protect with our moral code? Has our society dehumanized them? Is this basic care really acceptable?

Our trust began to dissolve when repeated letters and emails with the same concerns (inconsistent care practices, lack of transparency, inconsistent staff) simply resulted in us witnessing the repeated negative effects of this inconsistent care on my father. I never expected perfection, but I had entrusted this facility with my father's care and I did expect his basic care needs to be met. Are my expectations unreasonable?

Is this adequate basic care? I've asked the question, but I get no answer. If this is what adequate basic care looks like, this does not look OK.

Also, how many care aides currently caring for dementia or Alzheimer's residents actually have training for dementia or Alzheimer's residents?

Many of us have watched our vulnerable elders rapidly decline during Covid-19 without family care, oversight and protection. Our concerns vary from an alarming decline in general health, increased falls, medication changes, concerns for hydration, infections, changes in their mental well-being or behaviour, confusion, profound loneliness, to concerns about their feelings of abandonment and feeling unloved.

The media is shining a light on systemic problems in long-term care facilities such as fragmentation, understaffing, inconsistent care practices and standards, and lack of oversight. Accredited professionals are stating that these problems will take much time and money to resolve. So why isn’t there greater concern for our most vulnerable elders being shut into these facilities with these systemic problems? Have those problems been tucked under the protection of Covid-19 and now shielded from view?

Covid-19 has been a challenge for everyone and has had consequences hard to foresee. But those of us caring for beloved family members in care could never have imagined this journey of overwhelming helplessness, voicelessness, grief and emotional distress.

Please help us, the family advocates, in creating a strong voice that returns residents’ human rights by giving them access to our care and oversight. By signing this petition, you are asking our provincial and federal ministers of health to protect this right from ever again being revoked, removed or denied. By your support, you not only help us help give a voice to our seniors in long-term care, you will be helping your future self should you find yourself living in a long-term care facility and needing your voice heard. Thank you.

For more see the blog: Is the Elder Voice Heard?