Summaries Resource Exchange:
This Lived Experience Resource Exchange for June - July 2018 is a summary of face to face conversations, phone calls and three live (typed) chat conversations. These conversations involved input from 40 people from across all of South Eastern Ontario. 33 people were spouses, adult children, family or friends and 7 people were older adults living with a dementia, mental health or other neurological disorders.
Advisory conversations in June- July 2018 happened through phone calls,face to face meetings, one Province-wide Lived Experience Café themed live chat and two SE Ontario Lived Experience Café live chat that took place on www.dementiacrossroads.ca . Participants were invited to share their input – not as a complaints department – but from the view of making things better.
June to July 2018 Resource Exchange – SE Ontario Lived Experience Network
June – July 2018 Face to Face Advisory Conversation Summaries:
Face to Face Advisory Meeting Findings
Supports That Helped:
- “I think things are improving – especially when it comes to navigating health care and supports.”
- “The Alzheimer Society Support Groups have been a life saver for us. We are getting out and socialization and help and support at the same time.”
- “I was so impressed with the psycho-geriatric mental health. They really understood my husband. They knew how to speak to him and how to bring the best out of him.”
- “We have been fortunate. Our doctor was knowledgeable and proactive. He referred us right away to geriatric mental health. People told us about what services existed, how to find it and who to call. There was great collaboration and a sense that everyone was working together for our good. We know we are one of the lucky ones.”
- “Meals on Wheels and their frozen dishes are extremely helpful. That really helps me to manage things.”
- “I didn’t think I wanted to be part of support groups with the Alzheimer Society. I was very skeptical about sitting around complaining together about our problems or sharing private things with strangers. But, in the end, it has been the peer to peer support, tips and care that have carried me more than anything else.”
- “The Access transportation is something we really appreciate. We only just learned about it and it is so helpful to have door to door service.”
- “I am happy when I see where the dementia strategy is promising to put their money. I feel like they’ve heard us when I see funding heading for navigators, adult evening/day/weekend programs and respite. It is encouraging.
- “One frustration is that more than one social worker is supporting my husband. Decisions, plans and assessments occur with one social worker but then they don’t communicate to the other social worker. I feel like I always have to watch out for gaps – I can’t just relax and know they are taking care of things.”
- “The toughest thing is when someone needs help but is still deemed capable and there is nothing I can do. My mom is 84 and living on her own. She needs help but I can’t make her do anything. She is flying under everyone’s radar in so many ways. I am losing sleep over it.”
- “I appreciate the help we get in the home, but it is chaotic. Staff are always changing, people cancel without giving notice …complete no-shows… or they email/text me the night before changing the time they are coming from our agreed upon time. Sometimes I have appointments booked for myself or my husband and I’m expecting them to arrive at the planned time and when they change it at the last minute it just leaves me spinning. The supervisors assure me of one thing and then it doesn’t happen.”
- “When it comes to assessments, sometimes I feel like no one is really listening. The questions are canned questions but not designed for real conversation, listening or learning.”
- “My husband was only 55 when he developed dementia. He was too young for geriatric services. We felt so lost.”
- “It might be my husband who has the Alzheimer’s, but I feel like I am losing my sense of personhood and who I am. I am becoming lost in this disease.”
- “Lots of services and supports exist, but I can’t get him to accept the help. He is angry and in denial. He is younger than others at Adult Day and refuses to go. I can’t get him to do anything. I don’t know what to do.”
- “Friends have pulled away and our world just gets smaller and smaller. When things started to change nobody believed me. The loneliness is one of the toughest things.”
- “Getting past the answering machine when trying to speak with our case manager is so frustrating. There are two people we deal with and the receptionist tells me they are in the building but not answering their phones. I leave a message and they just don’t call me back. I realize people are busy – but just a little communication and little reassurance that you aren’t abandoned would go a long way. Even if they’d both phone you back within 24 hours.”
- “When I first started noticing the cognitive changes there were some really glaring things happening. I spoke with my doctor about them and his response is “We’re all aging.” It was almost three years before anyone would listen to me or believe me. Finally we switched doctors and things just improved so much. Things are changing, but it has been years of limbo.”
- “The Ministry of Transportation needs education. My husband failed his driver’s test and was quite content to give up his license. He could sense he was making mistakes and forgetting steps. He could parallel park perfectly, but forgot to look back over his shoulder. When he failed the MTO encouraged him to try again! They need to stop doing that. They need to understand about dementia and training on how to deal with the matter with sensitivity and respect.”
- “This is a 24 hour, 7 days a week matter. I am never not impacted by my husband’s Alzheimer’s. It has redefined me and our entire lives. I am so overwhelmed.”
- “Education is a real need for everyone – staff, volunteers anyone who works with people living with dementia.”
- “I feel bad for staff in LTC. I don’t think they have enough PSW’s as it is and then sometimes they are even short staffed from that. They are kind and working hard but there is not enough help.”
- “This weekend there was only 2 staff on each ward because of the shortage of PSW’s because of summer holidays and staff shortages. They were putting residents into their pajamas in the middle of the afternoon just to get everyone done. I was so concerned I felt compelled to stay and help my husband with his bath and to eat. I have seen our nurse put in a double shift because they couldn’t get anyone and she had to stay only to come back in the next morning to work again. It’s not right to the staff or the residents. It can’t be safe.”
- “I was with an older friend in the hospital and she had a fall. I went looking all over the wing to find someone and could not find a staff member. People were all on their break. I think there is a serious shortage of staff and PSW’s. I’m concerned that it is dangerous.”
- *A caregiver shared a story of their spouse having at home with dementia and they had a bad fall, breaking both arms. They were sent home from the hospital and although arrangements were made for an occupational therapist and social worker to come in, it 15 days before home care was arranged for her. During that time they had no assistance with transportation, bathing/personal care or meals.
- “My husband has dementia and heart issues. After surgery he was told he needed complete rest and no stairs, but they sent him home despite me telling them he’d have to walk up three flights of stairs to get to our home since I could not physically help him. They sent him home anyways.”
June, 2018 Live Chat Summary – SE Ontario Lived Experience Network: Was made up of five participants from Brighton, Trenton, Belleville, Kingston and Perth.
June 5, 2018 SE Ontario Live Chat Topic:
Background: Our SE Ontario Lived Experience Network Live Chat Topic comes from Cathy Study Smith, Manager, Specialized Geriatric Service CMHA, Waterloo Wellington and Pam Hamilton, Clinical Advisor and P.I.E.C.E.S. Curriculum and Education Consultant.
P.I.E.C.E.S. is a 16-hour Learning and Development Program for health care professionals throughout Ontario and across many other provinces that is currently being revised. The P.I.E.C.E.S. Program is committed to a shared approach that improves quality of life for persons who are at risk or living with complex older age related- health challenges including the dementias and/or other mental health and substance use needs. The P.I.E.C.E.S. Redesign Coordinating Group is seeking feedback and insight from the SE Ontario Lived Experience Network to assist in developing a greater emphasis on the importance of engaging and relationship building with the person, family care partner, and all TEAM members.
- Question: Reflecting on your lived experience, what specific moments, experienced along your journey, would you want included in the P.I.E.C.E.S. classroom learning discussions? Can you suggest reflective questions to ask learners for small group discussions?
KEY FINDINGS FROM SE ONTARIO LIVED EXPERIENCE MEMBERS:
What Specific Moments and Information would you want included in P.I.E.C.E.S. class room learning discussions?
Seamless Processes, Consistent Care Providers, Clear Lines of Communication and Collaboration between Health Care service providers and Case Managers:
- “Supporting my husband emotionally was quite challenging at our house as I couldn’t figure out how to calm my husband down or know what his triggers were – except sun downing was definitely a piece of the problem. It is tough when your own emotions are racing as well.”
- “I think they key message I would want them to take home (and this is a message that P.I.E.C.E.S. is trying to share) is that the individual is a person...with history, and family and value...they should be valued and respected when receiving care - not just processed.
- Also, that we need to slow care down....not work to complete the task...but meet the person's need. This really has to change - especially in long term care...it is not the staff’s fault it is the design and staff model etc.”
- “As a (person being educated to work in health care) too often I am trained by senior staff to get the job done quickly even when sacrificing care.”
- “It is also important that they take the time to get to know the person - We just did a whole project on personhood tools - writing down people's interests, hobbies, likes, dislikes, highs and lows etc. are all essential to providing them quality care.”
- “I think just the little things go a long way. Things like asking the patient how their day has been so far. How was breakfast? How are you feeling?”
- “I think I would want them to know how important it is to partner with the families – give them a chance to partner and to share their observations and input. When huddles happen in Long Term Care, if a spouse is present why not invite them in? Ask their input. Make a spot on the communication board for them.
- “Just simple kindness…it makes a huge difference. Staff has a lot of power.”
- “In the past Health care providers were trained to not be connected to the patient - to keep a distance so they wouldn't burn out. They were actually trained to not "care" - I think that is changing. As a daughter of a mother in care, my biggest wish is that the staff, caring for mom, will really "CARE" for her...even love her. That might be too much to ask - but at least that they see her as a person who matters.”
- “If health care staff could get into the habit of trying to improve their patient’s mood and cheer them up, their tasks would go a lot easier and in turn they would provide better care. It kind of goes full circle.”
- “I think reading body language is so important as well. I don’t see a lot of attention being paid in that area, especially when the nurse or PSW is being rushed.”
- “It needs to be a team attitude of any and all ideas and information from whomever – nurses, PSW’s family etc. in order to get the best quality of life possible.”
- “Please stop coming up behind folks and just moving their chairs without warning!”
- “I have witnessed the attitude that the clients do not know anything anymore so why bother…they are treated like a sack of potatoes.”
- “I think the concept of slowing down is hard for people to understand. It seems unattainable. I think it needs to be a mindset of picking choosing what is important in that moment and it isn’t a laundry list.”
- “It really boils down to rushed care. The health care professionals are being rushed probably because of understaffing and whatnot, then they get flustered and their care suffers. To combat that, I think just making them aware of the fact that things may get hard, they might get better equipped to deal with it when it happens.”
- “Teach them to focus more on the person – even if their time is short. Make that time as caring and person focused as possible.”
- “Put yourself in that place (the patient/resident) and think what you would want. It’s pretty simple really – some kind words, be gentle, don’t be loud or abrupt and don’t rush feeding me!! Say hello when you walk by and smile.”
- “Feeling rushed in a work environment is often a chronic condition. This needs to change – instead it seems to being modelled and taught as the mindset of health care.”
- “I would try and explain that my father is a gentleman to the core…but when two strange women walk into his room and start pulling on his pants without his full understanding, he will defend himself to the death. They call it “behaviours” but I call it stupidity!”
Can you suggest reflective questions to ask learners for small group discussions?
- “I think I would want them to know how important it is to partner with the families – give them a chance to partner and to share their observations and input. When huddles happen in Long Term Care, if a spouse is present why not invite them in? How can we better ask their input? Make a spot on the communication board for them.
- “How can we slow down the care we providing in order to treat the “whole” person?
- “Ask them to list the key things that make up a quality, person-centred environment. Have them list the values that would matter to them if they were being cared for…then ask them what it is they are ACTUALLY focusing their time and energy on.”
- “How can we complete our “laundry list” of tasks but in a way that promotes care, dignity – because truly are these not the most important things that should be happening at every moment throughout the more mundane tasks that are being performed?”
- “Would you like two strangers standing over you, talking too loud (Did I say I was hard of hearing?) and pulling on your pants?”
- “Would you like to be bathed by a near complete stranger and have this person now even consider your level of vulnerability?”
June 2018 Province Wide Live Chat Summary:
Behavioural Supports Ontario Provincial Lived Experience Network Advisory
The purpose of the Behavioural Supports Ontario (BSO) Provincial Lived Experience Advisory is to join voices from across the province to establish a provincial advisory network of individuals with lived experience. The Advisory also guides BSO projects and participates in an accessible virtual platform to connect people through shared experiences. Lived experience, in the context of BSO, refers to the experience of living with dementia, mental illness, substance use and/or neurological disorders or the experience of being a care partner with an individual living with one or more of these conditions. Examples of care partners may include family members, friends, etc., who play or played an active role in supporting an individual living with one or more of the above conditions emotionally and/or physically.
The BSO Provincial Lived Experience Advisory is co-chaired by Sharon Osvald, Lived Experience Facilitator for the BSO Provincial Coordinating Office and Rhonda Feldman, Mental Health Clinician with the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training.
Participants: Our Wednesday, July 20, 2018 Provincial Live (typed) Chat event on www.dementiacrossroads.ca included fourteen lived experience advisors from across the province. There were two facilitators, Sharon Osvald (from Brighton) and Katelynn Viau (from Sudbury), as well as the input of participants from Trenton, Kingston, Perth, Chatham, Toronto, Belleville, Cloyne, Barrie and Mississauga, Ontario. Maureen O’Connell, Psychogeriatric Resource Consultant in North Simcoe Muskoka was our special guest and brought us the following topic question:
Topic: Hope & Resiliency
The topic for June’s live chat came from Maureen O’Connell, Psychogeriatric Resource Consultant in North Simcoe Muskoka on behalf of their local Dementia Conference planning Committee, as they explore the topic of hope and resiliency: “the inherent strength that people have to cope and live well with chronic illness.”
Questions: How might health care providers build hope and cultivate resiliency in those living with dementia, complex mental health, substance use and/or other neurological conditions and their care partners?
- What actions, words or phrases help to build hope and support?
- What actions, words or phrases damage hope and resiliency?
- What strategies have you used to remain hopeful and resilient throughout your journey?
Key Findings: Question (1) What actions, words or phrases help to build hope and support?
Words of Support and Encouragement; Words and Actions of Partnership; Education for New Providers and Refreshing Education for Experienced Providers; Navigation and Clear and Honest Communication about What to Expect and the Need to Transform Care as Demonstrated by the Butterfly Project”.
- “You’re doing a great job! Try to increase confidence in the person.”
- “Provide caregivers with social workers, counsellors, navigators for the system.”
- “Although we want to focus on creating change - it is important that we also focus on the positive elements and good things.”
- “We are here to help you and your family on this journey. Let's work together to make every day the very best it can be.”
- “How can I help?... communicates a partnering attitude for the caregiver, it also gives the patient a sense of being heard and still in control.”
- “We need words of encouragement. As caregivers we are never sure we are doing enough or have we thought of everything?”
- “Provide appropriate and regular education for new providers and sometimes more importantly refresh skills and knowledge for more experienced providers.”
- “Having someone there to help navigate through various legs of the journey was very helpful...especially during the time of moving out of our home to LTC.”
- “Having recognition that the going is hard, particularly when the loved one has reached a new stage and doesn't recognize you or is very angry at you for not taking them home.”
- “A hug goes both ways. Staff sometimes need a hug when things get tough as much as we do.”
- “We need support and a person that can assist in making connections to other sectors.”
- “There is the need to feel like you are in control - (at least a little bit) having that navigational knowledge makes us feel a little less lost and afraid.”
- “Families need a partnership with the provider. They don't want to be talked to. Share options - not tell them it is one way only.”
- “Fostering hope...for me it is getting assurance that the person you love that is going through the stages of dementia may change in the way they look, the way they speak, the way they express themselves but by learning other ways to communicate, to reach deep inside that person you can still tap into the person they were before dementia.”
- “It's like a dance with the partner we have to make sure we move together but not to step on each other's toes.”
- “I think that fostering hope is tricky depending on the condition at hand. Family members can be frustrated in long-term care when they don't see improvement in their loved one suffering with dementia. It can be about expectations – honesty and education are essential.”
- “I like some of the approaches Teepa Snow uses. She acknowledges it is "hard or difficult. It acknowledges a discomfort in each person and the pain they are experiencing."
- “When I think about the person who encouraged me the most and gave me hope at the beginning of my journey, it was an old friend of my mothers who loved her and knew her well. She really knew and appreciated the woman we were losing (acknowledging their personhood and dignity). Her mother had passed away from Alzheimer's. She told me it was going to be hard, shared examples and difficult stories - but instilled in me the sense that what I was doing as a caregiver was really important - even a privilege as I would support this wonderful woman in her final years.”
- “A language of sharing the job not being pushed aside because we are not professionals.”
- Navigation was identified in the Provincial Dementia Strategy as a priority. Now, all Alzheimer Societies across the province will have a First Link Care Navigator in place for the purpose of linking with follow up. Just FYI.”
- “I think those First Link Navigators could play a role in fostering hope - connecting people with services and resources and equipping them with what they need along their journey.”
- “The navigator sounds fabulous - a brochure here along with this listing questions that care partners might want to ask - sometimes we don’t even know the questions.”
- “In offering choices- don't overwhelm. Would you like..? If, no, then another choice, or only 2 choices.”
- “We have one PSW who I love to pieces. She takes the time to make sure Mom is dressed nicely, hair combed, matches a hat with her outfit, puts on some lipstick. Now that is going the extra mile.”
- “Sitting down and having a break with the resident. I love this. The person opens up and it’s like being at home.”
- “When I see people going the extra mile, I feel that there is recognition that others are seeing my Mom as a person who like anyone else has feelings, cares about how she presents herself.”
- “Consistent good communication within the home, hospital, care place...all helps to create more hope and resiliency.”
- “One of our LTCHs has undertaken a transformation "the Butterfly project" it is amazing. The link is: http://peelregion.ca/ltc/butterfly-home/”
- “I believe there are very good staff out there. They give good eye contact, work "with" the person, encourage and support abilities and include them in decisions.”
- “It really this is about relationships and understanding the human spirit. Kindness can only go so far.”
Key Findings: Question (2) What actions, words or phrases damage hope and resiliency?
Words and Actions that Promote Stigma, Ageism and Lack of Understanding; Language and Actions That are Disrespectful or Do Not Promote the Person’s Dignity and Personhood; Language or Actions that are Punitive or Threatening; Talking To the Person Instead of With Them; The Need for Dementia Education; Words and Actions that Lack Empathy and Compassion, The Need for Support for Family Care Partners, Lack in Clear Communication About What to Expect and Inconsistency and Lack of Follow Through.
- "The word “demented” … it's better than it used to be, but I never will get used to it and always object when it is used. People need to know its offensive even if it is a "medical" condition.”
- Baby talk, like "Do you need the potty?" REALLY?!”
- “Don't do that!!I think your father is severely demented…That's not the way we do it here.”
- “This comes back to my earlier point about refreshing our more experienced staff. The colleges are doing a good job of bringing patient centered language into their curriculum.”
- “When I questioned how much sedative medicine my mother was on in the hospital, I had a doctor say, "She needs it or she will get up and fall...do you want her to break a hip?"
- Do you want him to hit someone else? It's not within our control yet there is such pressure!”
- “The words should be inviting. Would you like to come with me? Not "it’s time for your shower, let’s go".
- “Speaking loudly to the person with dementia, not giving enough time for them to respond before doing something "for" (to) them.”
- “Talking over the person while giving care. I hate this. It is like they are not there.”
- “Family doctors don't understand dementia either. More education is needed. Our experience was that we were on our own.”
- “If you put the person first and listen or observe - not just jump to conclusions. It takes time and patience.”
- “Support for families supporting loved one with dementia means helping them to deal with friends or family who do not understand the disease and the complications. Ask "how is your mother doing?" when it won't improve.”
- “Or any kind of behaviour is blamed on the dementia when it could be an underlying medical condition (instead of searching for things like pain or delirium or other issues).”
- “When expectations are not shared and explained properly it can damage hope and resiliency. A big gap I see is when people have had parents or spouses in Adult Day programs and then move to Long Term Care - their expectations are way out of sync with the differences that exist between the two. I see a lot of grief and hurt in people who have not been educated about what to expect. One woman said, “I thought my dad was moving to into a 24/7 Adult Day program when he entered LTC, but I couldn’t have been more wrong.” This took several years to overcome.”
- “Expectations are something that needs more attention/education. I don't remember taking a workshop about LTC education. Care Plan was new and I did not know about it ahead of time.”
- “Lack of education and knowledge of what to expect -If we know more, we feel more prepared, less alone and afraid...and more hopeful and equipped to face what lies ahead.”
- “Education: it was a journey into the unknown and not knowing what to expect on that day in visiting my mother. Each journey is unique. Part of the education is having what is needed at the right moment.”
- “Punitive language: even the process of application is a little threatening. That is, if you turn down the offer, you go to the bottom of the list etc.”
- “I would say not being consistent...promising to do something (a plan of care or activity) and then just not following through. As a family care partner I stop trying to be creative because I feel like no one else is when that happens….for example, recharging and IPOD or other electronic devices seems to be impossible in spite of a very carefully worded request posted. It leaves the message that staff doesn’t care or can’t be bothered.”
- “We try to communicate with staff small things that would make a big improvement in our loved one’s lives, but usually it takes repeated efforts to effect a change. Simple things like “don't us the suspenders until that rash on his back resolves, use a belt.” Or “No rice or milk until the constipation is better” or, or....that damages hope and resilience in family members. Trying equals being more frustrated and angry – it’s easier not to try sometimes.”
- “The Alzheimer Society needs to know that the I POD idea does not work in LTC environment...unless they can find somehow to make it part of the job and as it is now it's an "elective".”
- “The tone and the pace of speaking is critical - but staff don’t seem to have the time or the inclination.”
Key Findings: Question (3) What strategies have you used to remain hopeful and resilient throughout your journey?
Asking for and Accepting Support from Friends, Family, Alzheimer Society Support Groups; Getting Enough Rest; Knowing Your Limitations; Meditation, Prayer; Learning as Much as Possible; Learning to Live in the Moment and Seeing the Hope and Potential for Change.
- “I think, from my experience, that the feeling of being supported and knowing that you are not alone is so important. It's the knowing that others are experiencing similar challenges and the helplessness that can accompany the journey.”
- "No person is an Island"
- “There is an old saying "It takes a village to raise a child" In this case it takes a village to walk this journey.”
- “Sharing the load, we all have things to bring to the caring table professional, personal....we all need to be better listeners.”
- “I see some great care, but on the other side of the coin, someone else feels it is necessary to have an incontinence pad under her even though her wheelchair is already equipped, the lift pad under her as well, I feel like asking "would you like all that bunched up your back end” ?”
- “Living in the moment, like a patient with dementia. Letting the details take care of themselves.”
- Meditating before you get out of bed and again in the late afternoon...15 min. makes all the difference!!
- “It is hard to live in the moment as we are always planning our next move. Meditating and looking after ourselves is probably most important as those are things WE CAN CONTROL.”
- “Reaching out for help and getting enough rest.”
- “Thanks for help from Alzheimer Society.”
- “The Alzheimer Society is a model for providing hope and resiliency.”
- “I remain hopeful that the ministry is finally listening to us and as Dementia becomes more prevalent our voices too will get louder and stronger.”
- “With the recent Dementia Strategy initiatives I feel more hopeful than ever before. I believe people have been listening to us and other family care partners!! These are exciting times.”
- “Finding time and energy to look after yourself, meditation, art, massage, walking be with friends....whatever it takes to have some kind of a life outside of caregiving.”
- “Knowledge, control and how to effectively advocate. Advocating seems to be the #1 job.”
- “It is okay to cry, it is okay to be mad, it is okay to laugh, it is okay to find the humour in something that is not funny.”
- “I am hopeful that at the end of the day I will have done everything I can to respect my husband’s personhood and value him as my partner. I have to be sure to nourish myself in order to do this. I have also had to hire a companion for 8 hours a week to ease me.”
- “Humour is a coping mechanism, I found.”
- “Humour is key. You might as well laugh as cry.”
- “We all must be advocates as best we can; the more we speak up the more people will be forced to face this dilemma.”
- “We have to give ourselves permission to stay afloat, whatever that takes for us to do so.”
For information about how you can participate in future Lived Experience Café chats or Lived Experience video/teleconference advisory conversations, visit the Ontario page on www.dementiacrossroads.ca or email Sharon Osvald, BSO Lived Experience Facilitator at firstname.lastname@example.org . Sharon can also be reached by phone at 613-475-9943.