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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

April 2014
Injury in a long-term care facility
Apr 15, 2014 11:34 AM

Following my father’s death, the family felt we had no choice but to place our mother in a long term care facility due to the increasing medical side effects of her progressing Alzheimer Disease. After visiting 22 facilities based on the following criteria:

  • I insisted on having unrestricted access to my mother at any time of the day or night.  (I had been her full time caregiver for the previous five years).
  • What were the facility’s policies and practice of chemical and physical restraints on people with dementia (I did not approve of physical restraints in any situation and did not think that we had ever applied chemical restraints).
  • I had to feel that I would be proud to work with the staff in that facility as a part time care support worker. (I was an excellent personal care giver to both my parents, within the context of their own home).

We eventually settled on a small multi-cultural facility in the middle of a gritty neighbourhood in downtown Toronto. Though it was probably the most anguished day of my life, my mother was admitted to the facility without a problem. My mother adapted very quickly to life in a long term care, enjoying the structure provided by a fixed routine combined with the ability to live her life a full 24 hours a day. My adjustment was eased by the fact that I could see how advanced her Alzheimer Disease was and how pronounced the side effects were in comparison to the other demented residents in the home. However, if anything, my mother’s cognitive and physical condition improved somewhat upon admission and was sustained through the medical and attendant care provided by the long term care home. Also, the relatively small size of the home ensured a more personalized level of care and maintenance of some individuality of character and behaviour.

Within three years, however, she had become completely incoherent and largely non-verbal. She had lost all of her fine motor skills and there was a significant deterioration in her gross motor skills, including the fact that she couldn’t walk unassisted as she seemed unaware of obstacles in her way and she would suddenly collapsed, apparently when the brain signals  failed to reach the motor processes governing her walking gait.

One night about 3.30 AM, I got a phone call from the nurses’ aide on duty on my mother’s floor, informing me that my mother had fallen and couldn’t get up, didn’t appear to be feeling any pain, but was unable to identify what the problem was. She had been seated in a wheel chair and sent up to the local hospital Emergency. She didn’t seem alarmed, saying that all Mum needed was a check up by a qualified doctor.

When I came into the brightly lit Emergency Department, I could hear my Mum screaming at the top of her voice. It really wasn’t any articulate screaming, more like a keening, like a howling by some wild animal in the darkened woods.

‘Where is she?’


‘My mother!’

‘I dunno about your mother, but there’s an old street lady down in the drunk tank, waiting for the police to come and pick her up’

I will never forget the sight of her as I pushed the curtain. My mother as a street person abandoned in a drunk tank! Framed by the lime green privacy curtains, there was my mother lying on an examination table under the merciless white light hovering overhead. She was completely naked except for the straight jacket tied, binding her arms across her chest, the tapes tied to the metal railing. One of her legs thrashed against the restraints that tied her ankles to the metal railing around the examination table. Tears poured down her face as it shook from side to side, her mouth wide open, bellowing by then. I rushed over and immediately started to undo the restraints. Though she no longer knew that I was her son, she recognized a familiar face and quickly calmed down, letting me undo the straight jacket. As I finished, I was holding her up in my arms and noticed that the interns and nurses were standing, looking aghast, outside the limits of the examining room, reluctant to engage with me and my mother. I was in full tiger protective mode, protecting my weak, defenseless mother.

What the hell were you thinking? Drunk tank? She is in the final stages of Alzheimer Disease, you idiots!

‘Oh, sorry. We looked up from the Admissions Desk, and there was this disheveled old lady sitting in a wheel chair. The taxi driver dropped her off and just ran off,  leaving her there. It was clear that she was agitated, yelling, but incoherent, so we figured she was drunk or having some psychotic episode, so we took her in, and put her in the drunk tank till she cooled off. When we tried to get her into the bed, she became violent and completely uncontrollable so we cut all her clothes off and put her in restraints and called the police. She’s real strong, your mother, she bit us and hit us real hard. Good thing you came so quickly or else the police would have taken her down to the detox or CAMH!

While I held her, they started to examine her. I had to point out to them that one of her legs was immobile but twitching in a way that seemed to be related to the pain she was experiencing.  There didn’t appear to be any break in the long bones. So we wheeled her along through a maze of brightly lit hallways to be X rayed. There was nothing on the X rays, except that the leg was loose and a bit askew. I could tell that my mother was in pain because she kept moaning, and wincing or keeping her eyes firm shut. I was used to her silence, her ways of expressing emotions without the use of voice and language. My mother was an old trooper, a tough old broad, who didn’t hold with doctors and could tolerate pain effortlessly that would drive an elephant crazy! I had no choice but to take her back to the long term care home nearby and put her to bed. She was more than usually difficult to get into bed, grumbling incoherently, vehemently throughout being adjusted into bed. I just figured she was in one of her moods. There wasn’t much that I could do. The student nurse’s aide on duty that night was very solicitous about my mother and apologized for sending her off to the Emergency without any documentation. She was the only nurse on duty on the night shift for the forty residents on my mother’s floor. She simply forgot until it was too late in all the confusion of getting my mother into the wheelchair, down in the elevator, out onto the sidewalk to flag down a cab to take my mother to the hospital. She had only realized the error when she ran back into the building and found my mothers file on her desk. When she had called the Emergency Department, she had been put on hold and then had to respond to another resident’s needs.

The next day is still sort of a blur. No sooner than I had got home than my phone woke me with a phone call from the Administrator of the Home apologizing for the screw up the night before and telling me that my mother had again become belligerant when they woke her in the morning, resisted being dressed, and was unable to stand unsupported. They had sent her to another downtown hospital with a better reputation for handling falls and breaks in the frail elderly. Sure enough, further X rays revealed that my mother’s upper leg bone had broken right where the neck of the femur joins the ball which rotates in the hip joint. I rushed down to be with her, arriving just in time before her surgery. Indeed, she was pretty belligerant and aggressive but the attendants took her in stride saying that she was tough just like a hockey player, could really handle pain, keeping it to herself! After the operation was over the surgeons protected themselves by assuring me that my mother would never be the same again when the frail elderly have gone under general anaesthetic with that level of Alzheimer Disease related cognitive impairment and physical deterioration. Actually, my mother recovered much more quickly than expected. She woke quickly and quite alertly, was able to recognize and respond to commands, actually spoke recognizeable, appropriate words, was able to bring down a full bowl of light soup. She really was tough!

The next day, I went to visit her in the ‘ball and socket’ floor of the hospital.  I visited the office of the head doctor which had a metal ball and socket  hip joint being used as a door knocker! The floor was made up of rooms filled with little old ladies with quilted bed jackets, little boys and girls who had fallen off bikes, trees, jungle jims, or else smashed up burly Hell Angels bikers who’d flipped off the wrong end of their Harleys, all of them in the hospital for the same ball and socket replacement. The specialist gave me an update on my mother’s surgery and the first hours of her recovery. She told me that the best thing that I could do would be to get my mother out of bed and trying to walk for the first time.

‘I think that I should warn you, we think that your mother has a problem affecting her recovery. You will find her somewhat bloated in appearance, and experiencing some bowel discomfort. We probed her a bit and she is very tight in there as though there is a blockage. Has your mother had a colonoscopy recently? No. Well she may have polyps or some other type of obstruction, maybe a previously undetected tumour. Tumour? Do you think that my mother has cancer, like bowel cancer (always my greatest fear when dealing with the doctors over her various ailments) Well, maybe, but you know many women of her age and in her condition…….. cancerous conditions can come on very quickly. She definitely has some bowel obstruction. You see, she hasn’t had a bowel movement nor has she passed urine in the twenty four hours since she has been up on this floor……… and she has shown a persistently hostile and negative attitude about the introduction of the bedpan (still my favourite of all the symptoms I was served with during my mother’s various illnesses) Maybe she doesn’t recognize it but she definitely gets very angry and resists any efforts to get her to use the bedpan’. Unfortunately, we don’t have any choice but to catheterize her so that she doesn’t continue to be so bloated.

I walked into her room, not knowing what to do or say now that my mother could have cancer on top of all the other ailments that plagued her. I explained that I had seen the doctor and that she was doing really well but needed to start walking, reminding her how much she loved walking.  Though I never really knew how much she truly understood at this stage of the disease, I always tried to tell her the truth and keep up a steady flow of conversation, showing interest in her care. I reached down putting my arms behind her back and she reached familiarly to hold me around my shoulders as we had done so many times. She moaned a bit but didn’t flinch, as I pulled her up and out of the bed. She recognized the walker and started her shuffle walk. 

‘Now, Mum, you remember the routine at home (She was on an every two hour toilet schedule). Every time we go for a walk, you have to go to the toilet and do your stuff, right?’

‘Unhunh’ she responded affirmatively.

Without thinking I held the door of the bathroom open and my mother saw the familiar form of the toilet. She smiled from ear to ear, as though seeing a long lost friend for the first time, and started to shuffle quickly. I just had time to grasp her under the arms and lower her down slowly as she collapsed onto the toilet. Though her eyes closed with relief the smile never left her face as I flushed and flushed, and flushed again.

‘Done? Ready to go?’

‘Unhunh’, and off we went down and back up the hall.

As we came by the nurses’ station, a nurse called out, ‘Your Mom’s doing really well. That is pretty impressive for her first time up on her feet’.

‘Yes, and she had several bowel movements and passed all her urine as well!’

‘How did that happen?’

‘Well, I just put her on the toilet the way we always do before having some exercise when I visit her in the home’.

‘Wow, that’s amazing, we never thought of that’.

‘You just don’t know my mother. She has very advanced AD, but she is not incontinent; she just on a regular daily routine where she lives’. As I looked around at all the frail elderly old ladies, kids with broken hips, beat up hefty bikers that filled the ward, that the nurses had no training or awareness raising about care for elderly people with significant levels of cognitive impairment.

My mother made a quick recovery from this traumatic fall, broken hip joint, surgery, achieving and surpassing all of the physio-therapeutic treatment goals and objectives of her recovery. The shock of the accident and the sustained support that she received in recovery  seemed to realign her brain pathways to a certain degree so that she recovered some of her animated, determined, optimistic nature that allowed her to enjoy some limited quality of life in the long term care home for the remaining eighteen months of her life, when she died from the accumulated effects of the Alzheimer Disease and related ailments. She never had any cancer in any way shape of form.

What we learned:

The following are the observations of her son:

1. People with Alzheimer’s disease experience pain in exactly the same way and intensity as people without cognitive impairment; people with dementia simply lack the words and physical reactions to express the intensity of the pain they experience in ways that can be readily understood by healthcare providers.

2. People with dementia must be accompanied by a caregiver/spokesperson to speak on their behalf or else a comprehensive medical dossier, which can speak to a medical specialist or hospital admissions.

3. Healthcare personnel at all levels and specialities rarely have more than the most basic knowledge of the impact of dementia on the physical, mental, and psychological well-being of the frail elderly patient

4. Professional expectations/ financial remuneration for custodial/health care staff are much less for people working in long term care institutions than those for health care personnel working in hospitals.



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