Tell Your Story

Are you an elderly person looking for care at home? A caregiver that wants independent living for a senior friend or relative? Then this site is for you.

Sunshiners is a social movement.  Frail elderly people are an old demographic group that needs its own new label. Labels carry power. They’re short, bite-sized, media-friendly, memorable. We all know about Snowbirds. Not to mention thirty-somethings, pre-schoolers, Yuppies, and so on.  In that spirit, I’ve re-labeled “frail old people” as Sunshiners.

Why ‘Sunshiners’? Because I’ve seen countless frail, old people joyfully sitting in the sunshine on their porches and in their home gardens. The sun is a universal life-force, offering warmth and hope, even to those living in dire circumstances due to advanced age and illness. Hospitals are sunless environments. Sunshiners don’t belong in hospitals.

But this is not a crusade against hospitals. Most of the time, hospitals work very well. They are especially good at prevention and rescue, two things that unfortunately don’t usually work for frail old people. Hospitals do an outstanding job of helping relatively younger people with only one thing wrong with them. But when frail old people go to hospitals with multiple ailments, they often die in surroundings that are cold and clinical.

As the Sunshiners movement grows, this website will become a warm and welcoming place for Sunshiners and their families to meet, trade stories and access precious caregiver resources.

But I can’t do it alone. I need your help getting the word out. I need your help in starting a  social movement on behalf of Sunshiners.

If you’re a caregiver, a son or daughter or friend of a Sunshiner, the time to get involved is right now, while you’re full of energy and life. Because someday, when you’re old enough and frail enough, you’ll be a Sunshiner, too.

To be part of the Sunshiners movement, you need to insist on health care care at home for elderly people, a thoughtful approach when things go wrong, staying out of the hospital unless absolutely necessary, and not taking medication you don’t need.  There are thousands and thousands of others who feel the same way.

Here is where you get to tell your story about caregiving for the elderly. You can be as anonymous as you like, you can make comments, and you will probably discover that you’re not alone in some of your experiences.

 

13 Responses to Tell Your Story

  1. Andrea says:

    Dr. Sloan, I saw your interview some time in the last couple of weeks on TV, although I only caught the tale end of it. My mother (85) is in advance stages of Alzheimers, living in my sisters basement suite [Dunbar area] with the most loving, caring 24 hour home care. She is too frail to walk, feed, dress, bath herself and is in bed or a comfortable reclining/ assist lift chair. Her food is pureed for her although she is entering the stage where thin liquids are difficult and thickener has been introduced. Recently she has developed a very mucous cough which makes me think she is either experiencing a flu germ or more likely aspiration of her liquids which could cause phenomena. Her VCH nursing, mental health, OT all of whom visit her on regular basis can not diagnose in home for her. Nor has her GP offered to come. Although some have passed on your practice otherwise I have been told to take her to her GP’s office or the hospital. It will be near impossible to get her from the house to the car not to mention extremely traumatizing to be at the hospital or GP’s. Your home visit practice is a god send for many I am sure as this is where the system is lacking and many are needy of . How do I best go about having my mother become a patient of yours?
    Thank you, Andrea.
    Oct 18/15

  2. Catherine says:

    My father turned 100 in early June. He lives in an assisted care facility in Vancouver, where I visit him as often as I can. I live and work in Victoria so sometimes don’t see him for a month or two. My brother and his wife are the next of kin who are the primary contacts for anything related to his care.

    When I visit I feel that despite best efforts on the part of my brother and the assisted living facility, his needs aren’t being met. He has congestive heart failure, is very frail and needs a great deal of sleep. His mind is still strong and he is still interested in life.

    I decided to visit his GP today to see if there are any care options for him besides going into a long term care facility. I thought perhaps it might be possible to arrange for some palliative care where he is, for example. I was told that he’s not dying, so the answer is no. The doctor did try to qualify that, recognizing his significant heart challenges. Essentially I think the message is that unless his death is imminent, he doesn’t qualify for more care than he’s already getting.

    A part of me is inclined to try and accept that there’s nothing more that can be done at this time. I find it really difficult to articulate what I think is missing in terms of his care, so I doubt that I am fulfilling any useful purpose in trying to advocate for more. But I am still left with a feeling of helplessness that he has to struggle so much through this last phase of his life.

    • John Sloan says:

      Thanks for posting this. I think there are some things you could do for your father, but exactly what might depend on exactly what he needs, which you say you have trouble specifying. I suggest you give me a call at 604-788-4037 if you want to discuss this further. If I can’t take the call for any reason we can set up a time to chat.
      John Sloan

  3. Nina Pruesse says:

    Had my father been granted his wish in earl 2009, he would have died peacefully in his own bed at home. Unfortunately, after suffering a third stroke, he was admitted to hospital for three weeks where he was treated quite badly. He was given anti-seizure medication that may have been appropriate in the first week or so following his stroke, but the healthcare staff administered it to him every weekend, despite the Dr. taking him off this drug after the first week. It rendered him incoherent and took 24 hrs to wear off.
    Another alarming issue was the use of restraints. My father was a double amputee, having lost his legs at the knees in a motorcycle accident when he was 18 years old. For many years he had prosthetics and for the last 15 years he used a wheelchair. Unfortunately for the entire stay at this hospital he was kept strapped down unless a family member was present because healthcare staff did not want him falling out of bed or wandering down the hallways.
    In his last week of life, hospital staff strapped him to a chair one night and kept him in the hallway under the lights so that they “could keep an eye on him” until about 5 am. When I heard about this the following day, I knew immediately that he had to get out of there. He expressed his deep sadness at being treated without dignity. He was a retired chief psychologist and understood well how important it is to treat people with respect and dignity. We moved him to a longterm care facility at the end of the week. There he was well treated by a caring staff, free to come and go in his own wheelchair whenever he wanted, surrounded by as many loved ones for as long as he wanted, and died of a major stroke after three days in this facility.
    I have written a letter to the local hospital about his treatment and I’ve asked for changes to be made in the way staff treat the elderly. I am awaiting a response, and will read Dr. Sloan’s book, “A Bitter Pill”, with hopes that there are specific changes I can advocate for with this particular hospital.
    Many thanks for being a voice of hope Dr. Sloan.

  4. Mary McDaid says:

    Dr. Sloan, I am attaching our story. We don’t mind if you publsih it but some of it is disturbing. It’s really for you to decide. Thanks so much for all that you are doing as a senior’s advocate.

    A Long day’s Journey into Night – My Mom’s Story January 5, 2010

    Dear Dr. Sloane. I have been reading your book “A Bitter Pill”, a section at a time, over the last few weeks. My pace has been slow as I am only able to take so much at a time without becoming stressed about our own personal experiences. My Mom, Doris, died in hospital in July of 2009, after a prolonged stay of nearly 3 months. As a family, we have suffered greatly over what she endured while surrounded by a number of excellent and well intentioned health care professionals. I have been pondering a book or story about this journey, perhaps as much to purge myself of the trauma as to help others who may be facing a similar series of events.
    Mom was living on her own, widowed since 2005. Her overall health (considering her age) was what you would expect- borderline diabetes, high blood pressure, poor diet, glaucoma and “wet” macular degeneration. We had been working with Home Care to have someone at her house a few days a week and she was receiving “meals on wheels” three days a week. Family did whatever could be done to assure she was safe (I live an hour away but have a sister very near to Mom’s home), and she was determined not to leave the family home. She was an outdoors person, and would get out in her yard every day it was possible to do so. Mom had one other strike against her, in that she had suffered from manic-depression for her whole life. She had been taken off of lithium as she aged, primarily due to side effects, but provided with a “cocktail” of four other drugs, designed to help her sleep, keep her calm, etc. Furthermore, as a result of Nova Scotia’s health care crisis, we have thousands of people with no family physician, our Mother being one. Her family doctor had taken stress leave two years before and never returned to active practice. Whenever Mom required medical services, she had to visit the local outpatients department. All of this set the stage for her entry into hospital.

    On April 26, Mom was exhibiting signs of confusion, and my sister discovered she appeared to be feverish. It was clear she did not have a grip on her surroundings, so we, naturally, took her to the out-patients department. After various medical examinations, for some hours, she was sent to the resident Psychiatrist. As my sister and I had Enduring Power of Attorney, we felt we could interact with the doctor to explain we did not think this was a psychological problem. She had been plagued with a series of bladder and kidney infections and we knew this was a major issue for someone Mom’s age, and could contribute to confusion or dementia like symptoms. She had been tested for such an infection, but definitive results would take some time. In addition, she had endured a very invasive D&C process the previous fall, as there were thoughts she may have some form of cancer. She had been exhibiting symptoms, such as bloating, weight loss and discharge for some months. The results were inconclusive. Furthermore, when I had prepared a list of the drugs Mom was taking, we determined that two (of the prescriptions intended for her mental well being) had clear warnings for patients with Glaucoma. Mom’s eyesight had been deteriorating, further adding to her decline and frustration. On this day, in the middle of this personal crisis, it was impossible to discuss this with the Psychiatrist as he insisted on only speaking to Mom. Sadly, she had no idea what he was talking about. It was a terrible and tearful interaction, with us being put smartly in our place in regards to decisions regarding the best drugs for Mom, and being told “not to rely on the Internet for our information”. Now, I have a University education, and am a business person (not a health practitioner) but did do a great deal of research into her various prescriptions. We felt prepared to have a rational conversation, and work with her physicians in terms of the direction of her care. That was not to be.

    In the end, that day, Mom was sent home, with an antibiotic for a bladder infection. She was still very ill for the following two days, so we had someone stay with her, especially at night, as she was not sleeping properly and talking about the past. The third evening, my sister tucked her in bed, and felt she could go home, leaving Mom to rest for the night, as she seemed a little better. At 5 am I received a hysterical call from my sister saying a neighbor had found Mom lying in the middle of her street, wrapped in a blanket. Fortunately, this gentleman saw her and was able to rouse a neighbor. She told us later she was hot and had wanted to go “to the beach”. It was rainy and very cool (late April) and she was almost hypothermic when they rushed her in. I drove frantically to my home community, in the driving rain, frantically trying to determine how we could have better managed Mom’s situation.

    This time, the hospital was compelled to take Mom, and so she was admitted. At the urging of long term care (she had previously been assessed) we reluctantly started the process of documentation for admittance.
    On April 26, 2009, she entered into the hospital. She was beginning to feel much more herself by the following week, so we were quite buoyed by her condition. Shortly thereafter, we noticed a huge change. Note that I only saw Mom about twice a week at this point, so changes were magnified. I inquired as to whether she had a change of medication that could have been affecting her, and the reply was “only the Seroquel” requested by the Resident Psychiatrist. Imagine my surprise when I researched this drug. We requested that she be removed from this medication, and we were told this would have to be done gradually. I still shudder when I think of how much she changed, and her personality, which had always been extroverted (and occasionally even caustic if she was in the right mood) never did resurface. She became a mere shadow of her former self.

    In late May we met with Long Term Care as it appeared Mom’s overall deteriorating condition mandated she enter a nursing home (and we were getting pressure from the hospital to do so due to costs). I took a day off to spend with Mom, as she was so lonely, and we filled out the forms that were required to get the wheels in motion. She was still not feeling well (physically) and had been vomiting on a regular basis. The hospital team felt she should be in their “transition unit” but I did not support this decision, as she was still obviously not well. Regardless, she was transferred to this ward where there were several elderly folks in various states, all awaiting long term care. There was one nurse, and the care was limited as a result. Mom was weak, not eating, and not feeding herself. My sister had to come in from work each day to bathe her and brush her teeth. She was also feeding her until we asked that someone please assist with this task. She had lost her desire to get up and around, and was beginning to show signs of pressure points. She was also allergic to latex, and other plastics, and the plastic pillows made her head red and itchy. We asked for this to be added to her chart, and even brought in new pillows, but each time I returned she had another plastic pillow. She was still on the Seroquel and also still nauseous. They sent her out for tests of all types several days a week, and she was quite exasperated with the process. A barium swallow caused her to gag and intake some of the substance, (which eventually led to pneumonia). As a result, it was requested that she go on the thick liquid you described in your book. On my next visit she appeared to be very ill, and we thought she was dehydrated. When we inquired about this, the doctor (one of a rotation of about seven) asked us how much liquid she was consuming (difficult question for the family as we had no idea). They did put her on an IV, at our request, and the following morning, she was appreciably better.

    In early June, the hospital was invaded by a bout of Norwalk, which poor Mom surely didn’t need. She had lost 25 pounds the year before she entered the hospital, and another 20 pounds since her admittance, and she was just beginning to recover from the pneumonia (she was a fighter). We were beginning to realize she would not be getting out of her bed again. She begged me for glasses of water, when she felt well enough to do so, and I must admit to sneaking sips to her, despite the glasses of icky cranberry goo they kept trying to force on her. She was eating very little, and the Norwalk had a terrible impact on her health, particularly where she was not in the medical unit. We spoke with a sympathetic doctor, and she was readmitted to the medical ward the end of June. We were not permitted in the hospital for about a week, due to the Norwalk outbreak, and all of us were sick as well. I wondered how on earth Mom could have felt that bad. When we were allowed back in to see her, she had failed greatly.

    In July, our conversations with our Mother were one syllable, mostly yes and no. She no longer smiled when one of our children arrived to see her, and she no longer asked us not to leave. I told my sisters they must be prepared, as it was clear she was failing quickly. She passed away July 18, at 2 in the morning, with her daughters around her. Her (and our) last indignity was the well intentioned nurse who kept checking her feet. When we asked why, she explained that the body begins to die before the patient stops breathing, and the feet are the first sign, as the skins darkens. I cried over that memory for weeks. The doctor on duty that week told me they had discovered Mom was suffering from some “underlying pathology”. It was clear she had died from some form of cancer, as she was down to 79 pounds.

    Please know that we met many amazing, wonderful people, but we certainly felt helpless against the wave of changing commands of the many doctors, all of whom would serve one week at a time in the hospital. I now understand what it means to be an advocate, and we tried our best, not always sure what battles were ours to fight, but pushing along anyway. The LPN’s were very helpful, although overworked, and it was apparent that the seniors didn’t fit into any of the general policies or procedures related to care within the institution. I’m not sure what would have happened if we kept her at home, but my Mother in Law, who passed away in 2000, had been cared for at home, and received palliative care. She suffered (she too had cancer) but was not subjected to the experiences of my Mom, and she was given special care that Mom never did receive. Hindsight is a wonderful thing, but we now also realize we did all that we could do. We were all caught up in a well intenstioned system that is simply not designed to do the right thing by this type of patient.

    Thanks for your advocacy and your book. It has allowed me to realize we are not alone in this experience, and that someone who can actually make a change has the courage to speak up. I’m quite sure my Mom would have really liked you 

    Mary McDaid

    • John Sloan says:

      Mary, I’m grateful for the time you took to tell this story, and it does scare me a little that although the details differ, the general plot and the sense of helplessness are extremely familiar to me.

      We think we know what the problem is, and we think we know how to fix it, but how do we GET THERE from here?

  5. Gail Bruhm says:

    My company, CareStrategies Inc. works with family caregivers, primarily in the workplace, to try and assist them to find a healthy balance between their work life, family life and caregiving responsibilities. A tall order for many. We also work one-on-one with families to try to relieve some of their stress and distress. Many are long distance family caregivers.

    For quite a few pages into your book, I was wondering if you were confusing family caregivers and care providers (which often is the case) but eventually I discovered, to my gratification, that indeed you were differentiating between the two groups. I have been on this band wagon for over 20 years to leave the term caregiver for those who give care to family and friends and use the professional designations for those who have worked so long and hard to get them. I noted recently that the CMA mentioned the need to support caregivers which is great – however in their report they used the term ‘informal’ caregivers which send me into a lather!! As one caregiver told me years ago – there is nothing informal about what I do. I never used it again. Another term I never use is ‘loved one’ ever since an adult child told me she now has to give care to a parent who had sexually abused her as a child. Many give care to people they don’t love.

    I ‘enjoyed’ reading your book and it echoes many of the things I have been thinking and reminding people of for years. Thanks for putting it in print. Caregivers know so much more than they are given credit for, it is ridiculous that they are not consulted and supported as members of the care team. If all the caregivers resigned, what a mess things would be in.

  6. Janet Janovick says:

    This is a cautionary tale of how a health care professional can abuse a position of trust. Unfortunately, it is a common one. I hope it serves as an alert to those with friends and family living in the community who may be targets for abuse.

    The health care system and the legal system have yawning gaps in care and protection of vulnerable seniors living in the community. In 2007 my family and I became concerned re: our bachelor uncle (Ed) who lived alone on the family farm in the Columbia Valley. Despite having ample financial resources, he wasn’t eating well or buying food. In our experience he has always been limited intellectually and naïve. I contacted the Chilliwack Health Department and talked to a nurse/case manager about our concerns and his limitations. I knew any home help would depend on a financial assessment and I knew that this might prove problematic as he is secretive and suspicious of any inquiries about money.

    Instead of protecting my uncle from abuse, this nurse turned into the financial predator, gaining my uncle’s confidence to the point that he referred to her as his girlfriend. I filed my first complaint with the College of Registered Nurses of BC and Fraser Health in 2009 when a friend of my uncle’s, who visited frequently, contacted a family member to raise the alarm re: the nurse’s suspicious behavior. The FHR ignored my complaint but the CRNBC, after an investigation, placed conditions on the nurse’s licence. At this time I also contacted the Office of the Public Trustee with my story. The person I spoke to agreed that the nurse’s behaviour sounded suspicious but that I would have to work with the Health Dept. In the meantime, Fraser Health told me that the nurse had moved and was no longer officially working with my uncle. In other words, what she did in her free time was her business.

    Prior to this we contacted my uncle’s G.P. to discuss our concerns. This doctor said that Ed’s only health issue was mild Parkinson’s and that he had a “right to live at risk”. This was a refrain we would hear more than once. This nurse’s Team Leader also stated that Ed had a right to live at risk. This is the mantra of the health care profession. I can agree with this statement, but only if the client is capable of rational thinking.

    At Xmas my sister phoned my uncle to wish him happy birthday. He told her that the nurse was going to move in with him on the farm after Xmas. I relayed this to the investigator at the CRNBC, who promptly phoned the nurse to question her; the nurse “vehemently denied” this. Thinking this was my uncle’s romantic fantasy, we didn’t give it serious thought. Fast forward to Easter 2010 when my sister received a phone call from Chilliwack Hospital, relating my uncle’s admission to hospital on Feb. 26, in a confused and malnourished state. Staff knew of our existence, but because my uncle wouldn’t give permission to contact us, they did not, despite a geriatrician’s assessment that my uncle had borderline intellect and Parkinson’s Dementia. We were very upset that we hadn’t been notified, but even more upset to find that the nurse had obtained power of attorney and “wanted to live on the farm”, according to my uncle.

    Since then we have dealt with many stressful, emotionally debilitating situations – we have visited the farm to obtain the keys from the nurse, changed the locks on the house and gate, found my uncle’s truck missing and registered in the nurse’s name, spent thousands in lawyer’s fees trying to obtain committee ship for Ed’s financial affairs, dealt with doctors who have dragged their heels in sending affidavits attesting to my uncle’s incapability in dealing with his finances, enlisted the support of the Office of the Public Trustee in freezing my uncle’s bank accounts and getting a caveat on the farm to prevent its sale.

    The CRNBC did a thorough investigation and as a result the nurse has had her licence to practice suspended pending compliance with several conditions. The F.H.R., on the other hand, ignored my first complaint. After my second complaint, an investigator told me that the nurse claimed her family was friends with my grandparents and that she was never involved with my uncle other than as a friend. When I protested that this wasn’t true, I was told, “prove it”. Fortunately Dr. Sloan, in examining my uncle for the purposes of our submission to court for committee ship, asked him how he’d met this nurse. He replied, “through the Health department”.

    Although it was quiet painless for the nurse to obtain POA for my cognitively challenged uncle, the court requires us to jump through hoops to obtain committee ship. Both must be served with copies of the affidavit before we appear in court. The nurse has her house (which she co-owns with her husband) up for sale and has left no forwarding contact information. It has been a challenge to track her whereabouts and, needless to say, costly to our family.

    I encourage anyone with family or friends who are presently functioning well in the community to have those difficult “what if” conversations – what if you became incapable of looking after your finances – who would you want/trust to do that for you? Circumstances can change so quickly and opportunists can appear out of the blue.

  7. Frances Friese says:

    I work as a companion to a couple of old ladies who live in care facilities. I work the front line and I am here to say old age can be “hell”, as one of my old ladies put it. Slowly, bit by bit, everything is taken for you. I watch the nurses with their carts piled high with bubble packs of medications, doling them out to our “sunshiners’. They choke back their hand full of meds (I believe the average being an astonishing 11), typically, only to bide the time dosing in their chair, waiting for the next meal. For the most part, every movement is hard, life is boring, they become disinterested. I see the ambulance come quite regularly to “save” someone. Rushing them to the sterile environment of the hospital for a battery of test, procedures and yes, more medication. At what personal cost, what financial cost, FOR what I say??? To me there is little compassion, little dignity in making their bodies stay alive when there is little or no quality of life left. We’ve got the medical intervention side more then covered, what about the human side, the person inside that is not the body??

    We are ALL in this together. Think about it, make your voice be heard. Things need to change. It’s in all of our best interest.

  8. margaret mccoy says:

    Hello Dr. Sloan,
    I saw you being interviewed last night on Shaw TV. I was so impressed and also comforted by your words and your outlook on elderly people. I was in Toronto recently to assist my mother with her 90th birthday celebrations. She sold her house last year but refused to move into an assisted living space and so she and her 80 year old husband instead moved into an apartment near their old home. She is frail and uses a walker, suffers from osteoarthritis but has none of the dementia that can so often come with age. My brother lives in Vancouver too so we are worried about her but so far she seems to be doing very well. I call her often and visit when I can. We’ve set up caretakers to visit her and go for walks etc. but she was not very keen about any of this at first. Slowly she’s come around to accepting help. Your words about the elderly dealing with different issues after 80 or so really struck a chord with me. My mother well into her 80’s walked to the rec. centre, swam three times a week and went for coffee with her exercise pals. But many of her friends died, or became seriously ill and she stopped swimming. Now at 90 she can’t do a lot of things she used to do and is feeling quite frustrated understandably. I will tell her about your understanding of the elderly (she loves doctors!) and that this is another stage of life. Teens, adult, menopause, post menopause and now elderly. I think if she accepts her limitations as just another aspect of ageing, frustrating though it is rather than feeling like a failure because she lacks the strength of her younger self she will more readily accept the help of others. Thank you so much for all of your work. I have so many friends who have elderly parents plus I have a few friends who are elderly themselves. One of whom is a neighbour who at 90 told me he had to rethink his lifestyle because of a ‘bum knee’ No more skiing or tennis! He turned 95 this month and still walks down to the bus stop but finds it necessary to take a cab up the hill. A hill by the way that taxes my 60 year lungs. Thanks again Dr. Sloan. You are a godsend.
    Warmest regards,
    Margaret McCoy

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