Family Caregiving & Caring

Family is invaluable! My husband and I have been providing my father with four to six hours per day of physical care and support with hearing disability, mental health, and quality-of-life, most days, since 2017. This is above and beyond the 3.36 hours of direct care that residents should receive according to guidelines set by the Ministry of Health.

According to the Office of the Seniors Advocate BC, in 2018, 85% of long-term care facilities were BELOW the BC provincial guideline of 3.36 direct care hours per resident, per day.

In 2016/17, the Office Seniors Advocate conducted a survey of all publicly funded care homes throughout B.C. and heard from over 20,000 residents and family members one unifying message:

“We need more staff and we need more consistent staff."

— Seniors Advocate BC FUNDING LONG-TERM CARE Report 2020

THE POSITIVE IMPACT OF FAMILY PHYSICAL CARE

Our four to six hours per day were continually being reallocated between creating fun and loving memories, physical care, supporting my father's hearing disability, and ensuring that he felt safe, heard, loved and connected with those he loves. My father's abilities were declining over the years, and over time our focus shifted more and more to his physical care, as well as still supporting his hearing disability and mental well-being. Of course, there was also time to enjoy some family fun with many activities and outings.

Currently, in mid-2020 my father is suffering from dementia and has a hearing impairment that requires support. He has lost his ability to walk, to ask for or seek help when required and is unable to use the call button provided to communicate with staff. He is completely reliant on the people who care for him for his comfort and safety. 

There is no substitute for the love and care a vulnerable senior receives from members of their own family. There is no other more powerful care, support, love, trust or bond.

CONSISTENCY

In 2016 a wonderful nurse told me: the #1 most effective and positive care practice for my father is consistency. Naively, I thought that this was a priority within the system too and was very disillusioned to experience so much fragmentation and inconsistency. In early 2019, my husband and I couldn't stomach the effects of inconsistent physical care any longer. We began providing physical care at noon and on until bedtime, along with occasional help from trusted care aides. We focused on consistency of care and care practices, response times for my father's basic needs such as toileting, regular and thorough sponge baths, and skin moisturizing. We also monitored his meals during lunch and dinner, encouraging slow eating and hydration, and maintained and supported his hearing disability, mental health and well-being. Our consistency has been a key component in my father's quality of care and life and what a learning curve it has been for us on this journey with an aging senior!

OUR CONSISTENT PHYSICAL CARE BEFORE COVID-19

On December 17, 2017 we noticed the deterioration of my father’s skin and the harmful effects of urine left on his skin too long. We consulted a nurse and a skin doctor outside the facility for guidance on how to help my father.

The facility had been using Dimethicone Protectant cream, which seemed to make my father very itchy. We began trying various baby skin products and found we had the best results with Burt's Bees Baby nourishing oil for moisturizing. We applied Burt's Bees Baby diaper rash ointment on his buttocks with the zinc barrier at night, and the Aleya Soothing Diaper Cream on his shoulders, back and hips to provide a non-zinc barrier, which is not messy like white zinc, to protect at night.

Skin Care Health

My father’s patterns for elimination were consistent. He ate, then needed to go to the toilet. At 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, as well as the cleaning and care of my father’s skin, and see what we learned. We matched up his pattern of elimination with regular toileting after his lunch, mid-afternoon and bedtime along with consistent skincare. The results were amazing! His skin remained clean from 12:30pm to 8pm bedtime, clean for over seven hours of virtually no contact with urine or ‘poo’. Our consistent skincare included proper hygiene and moisturizing of Dad’s skin – even lifting and cleaning under the foreskin of his penis, which is often neglected by casual staff (I realize this can be an uncomfortable area to have to clean as a care aide and as a daughter! There may be reluctance, but this is a very important area to keep clean in preventing infections – preventable infections). My father’s skin healed, the irritation and discomfort ceased, the itching stopped, and the risk of possible infection was mitigated.

Here’s the important discovery: the toileting times written in on my father's care plan were around lunch, mid-day and bedtime. These were the same times my husband and I adhered to with consistency, but the results were not the same. I do believe that the 10-15 minutes of skincare that we provided is the important discovery.

The photos show the results of our consistent toileting and skincare throughout 2019. The 2019 photo is not altered in any way. The Burt's Bees Baby nourishing oil on my father's skin added a sheen to the skin that the camera seemed to have difficulty capturing with clarity, but the difference is still clear.

I want to be clear here. Our efforts were not large efforts using many care hours. Our efforts were 10 - 15 min. of time, paying attention to the detail of our care. I have found that, with elder care, it is the small details that have the largest impact. If these small care details are not done, it does not take long for the skin to reflect this missed effort. We believe that much of the negative skin impact is preventable when simple basic skincare is consistent. The care details in the photos speak volumes about my father's comfort.

Also, by toileting at 12:30pm, there was not one incident under our constant care of our arriving at 3:00pm after his nap to find Dad, his bed and bed rail smeared in excrement as happened previously.

Bathing and skincare: with our consistent care practices, which included body sponge baths and the application of lotions, my father’s skin healed and there were no boil-like sores in his groin area from January 2019 to March 2020 when we were prevented from visiting and providing care.

Feeding

• Feeding: We helped my father at lunch and dinner. Dad has no back molars and a digestion/esophagus problem that requires smaller portions and encouragement to eat slowly (which was highly recommended by the specialists/dietician we saw years ago as well as the current dietitian). Feeding takes time that the care aides don’t always have. Rushing is common. We also insured Dad’s meals adhered to the meal card instructions given by his dietitian.

Hydration

• We learned early on the signs of dehydration: my father would become constipated, confused or disorientated, darker than normal urine, and tiredness. For years my husband and I have been paying attention to the amount of fluid given to my father and ensured that he received a minimum of 500ml of liquid from 3:00pm to 6:00pm with low-sugar, nutritious juices that we provided. We learned to cue him and/or encourage him to hydrate in a gentle way. The difference in his physical and mental well-being was readily observable. He had regular bowel movements, was clearer in thinking and understanding of our conversations and instructions, his urine light and clear. Overall, he had a noticeable ‘aliveness and pep’ in the quality of his days. We took the time to hydrate at a gentle pace that dad responded positively to. We found that when staff offered to my father water or juices, oftentimes the liquid would just sit there, until staff threw it out. Few staff had the time to ensure that hydration was happening, or could cue and encourage my father, so we took the time and learned which cueing works and what doesn’t.

Oral and Dental Care

• Dad has his original teeth. To maintain the fragile state of his teeth and ensure gum health we flossed, picked, and cleaned his teeth 2-3 times a day.

Chair Seating Ergonomics - Preventable Pain

• We corrected and adjusted Dad’s posture in his chair to prevent unnecessary pain as he sits in his chair for long periods. Placing his body in a position that supports him ergonomically makes a big difference with pain prevention. It has been very challenging to have staff understand how important this is.

Do the first 5 photos look comfortable to you? This is how I found my father repeatedly placed in his chair by the care staff who, upon questioning, replied,"I have done my best!” I did try to advocate for better chair positioning but I was told, "We will not be circling back on this issue".

Note: The last photo is MY PLACEMENT of dad in his chair. Notice the difference?

I have tried to explain to staff about this, that placing Dad: slouched with his ankles dangling past the foot support causes him lower back pain. My pleas went unheard. Here's a video where I have walked into the room to find Dad, yet again, placed in his chair with feet dangling over the foot support. I'm not heard in this; perhaps someone will believe Herbie.

This is not about needing medication for the pain, this is about prevention of pain, taking the time to place him in his chair where his positioning is supporting him and not causing him pain is a people choice and preventable.

My father had a fall off his bed in 2017 and was found on his knees. I believe he hit his tailbone on the edge of the bed when he slid off, as it was very sore, and he mentioned and pointed to the pain at his tailbone. We purchased this MemorySoft seat cushion to help coccyx / tailbone or sciatica pain, improve posture, and help with comfort. It is free-floating on my father's chair seat, but the fabric is not slippery and it does not slide around. The U-shaped hole needs to be placed at the back of the chair and dad's tailbone needs to be lined up to land in the U-shape. Once dad is in his chair, he does not move around – he's not able to – that is why the placement of his body in the chair is so important. It's not difficult to do – it's simply one of those small details that needs seconds to consider. What you don't see in the five photos above is the detail of the placement of this foam cushion dad is sitting on. When I find him slouched with heels dangling, oftentimes his tailbone is not positioned in the U, it's positioned in the middle or the front of this foam. My father can be sitting in this chair for hours with this foam not positioned in the way it was designed to help. When I see Dad placed in his chair the way you see him in the first five photos above, I find it upsetting and my heart breaks. Again, preventable.

Hearing Aids

This is one of the most important devices for enhancing my father’s quality of life. As I wear hearing aids myself, I understand how vital they are for connecting to and understanding the world around him. This is especially important for an elder with dementia. There have been a lot of studies on hearing loss as a modifiable risk factor for dementia. Not hearing affects cognitive function, speech perception, quality of life, physical activity, loneliness, mood and medical health. Without it the brain begins to atrophy, and our loved ones slide into the fog of dementia. I strongly believe that wearing hearing aids delayed his cognitive decline and are essential for his emotional well-being and mental health.

I have been providing assistance with his hearing impairment by caring for, cleaning, and maintaining his hearing aids and also cleaning his ears and removing ear wax — so important when wearing hearing aids. The consistent care of his hearing aids and his ears and ensuring the hearing aids are in his ears properly, offers him his best opportunity for a good quality of life.

Hearing aids worth $6,157.50 have been destroyed at the facility – one pair is believed to have been flushed down the toilet, another put in the washing machine, and the others died on shower morning. It is discouraging for a family member to invest a lot of money so their loved ones can have this important equipment, only to have it lost or broken. No one’s fault, though I do feel there has been very little interest by staff in understanding these life-transforming devices, how to properly care for them or how to properly insert custom ear molds into my father's ears (see photo). This is common, and yet custom ear molds are not difficult to insert. They glide easily into place, yet few staff take the time to understand how. Hearing aids are such important devices that I feel they are worth a little training, as they offer such incredible value to a resident's life.

Fingernails

• Every two to three days I would trim/file Dad’s fingernails to keep short to help minimize scratches when his skin is ‘itchy'.

• Wash his hands before and after meals.

Eyeglasses

• Eye Glasses: We cleaned Dad’s eyeglasses daily or more often as necessary, so that he could see clearly.

Toenails

• I gave my father monthly pedicures.

Haircut

• I give my father his monthly haircut.

Clean & Sanitize Surfaces

• I sanitized surfaces in dad’s room.

Laundry

We ensured that Dad’s bed, which had been made in the morning, was free of urine or excrement smears for his evening sleep. In December 2018, I noticed Dad’s bed pad, fitted sheet, and bed were wet with urine when I went to put him to bed. His bed had been made but was wet with urine!? Could this be why Dad’s skin was so “itchy"? We believe, in part, yes. 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 and we were able to remove the gloves we put on my father’s hands at night to protect him from his scratching, from mid 2019 to January 2020.

Trying to bring this issue of urine or excrement smears in my father’s bed seemed to create tension rather than concern. To maintain peace, I changed Dad’s sheets and kept silent, bringing his pillows home to wash when wet or soiled.

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DEEP CONCERN - The Ministry of Health in Communique

I have thoroughly read the information provided by the Ministry of Health in Communique Number: 2020-1. It states the following: “Visits paramount to the patient/client’s physical care and mental well-being, including: Assistance with feeding; Assistance with mobility; Assistance with personal care; Communication assistance for persons with hearing, visual, speech, cognitive, intellectual or memory impairments; Assistance by designated representatives for persons with disabilities, including provision of emotional support."

I was providing Essential Care for my father for 16 months pre Covid-19, with daily visits of up to six hours per day. I provided emotional support for his dementia, assistance with his hearing impairment (not only the care/cleaning/maintenance of his hearing aids but also cleaning of his ears and removing ear wax — so important when wearing hearing aids), oral hygiene, and overall hygiene to support healthy skin and minimize the threat of infection. My duties have been toileting, thorough cleaning of affected areas, regular and thorough sponge baths, and skin moisturizing. I was providing assistance with eating; my father has no back molars and a digestion/esophagus condition that requires smaller portions of food and encouragement to eat and hydrate slowly (recommended by the specialists/dietician we saw years ago as well as the current dietitian). I also insured Dad’s meals adhered to the meal card instructions given by his dietitian.

I provided communication assistance, as my father is no longer able to ask for help and use the call button. He requires cueing to drink and help with drinking water, he does not ask for his hearing aids or glasses, or for better placement in his chair if the position he's been placed in, hurts. He is completely reliant on the people who care for him for his comfort and safety. I was also providing him with all of his personal care such as trimming nails to cut down on scratching, foot care and haircuts. There is no substitute for the love and quality of care my father has received from his own daughter. There is no other more powerful care, support, love or bond.

Five months after the public health emergency was declared in B.C., many family members are still being denied Essential Visitor access to their loved ones even though provincial health policies clearly provide for their right to have that “essential” status. There are two defined categories of visitor access: Essential Visitor and Social Visitor. Essential visitors come into the residence regularly to look after one resident (patient), following the same safety precautions as staff. This allows families to be involved in the residents’ care again, as they were before COVID-19. I have been denied Essential Visitor access and I disagree with their denial.

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, and grief.  

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 on this, see the blog: The Concerns with Covid-19.