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The Lived Experience Cafe chat

The July Live Chat topic was OPEN

Due to smaller numbers and summer holidays, the July Live Chat was an “OPEN” Theme

Key Findings from July Live Chat:

Participants saw the value in “getting away” as a form of respite:

  • “Respite to me was when a family member that dad liked came to stay for 3 days while I went to an event out of town that i was looking forward to...When I returned I was rested, had done something I loved, and had learned something new.”
  • “I like the caregiver retreats that Belleville does 2 times a year!”
  • “I am on much the same page - only I do not have that person coming to stay while I get away. I am not sure how respite for me could be worked out, I have asked my siblings to take holidays and come stay for a while but that seems to go nowhere. No matter which outside approach I might like to take, it will still be a stranger trying to help a situation that is ever increasing in intensity.”
  • “Getting away is the best respite!”
  • “Agreed…Getting away is the best respite.

The Stress of Being “On Call” when parent or spouse is in care:

  • “My mom was having a difficult time and the staff was unable to settle her. They called me several times to ask if I could come and help settle her down – but I was away, so from long distance I was trying to handle things and call in other relatives who live closer by….but it is so stressful.”
  • “It can be a heavy burden to be the only person who knows how to work with him. When they can’t get him to calm down or re-direct him, I often get called in. Sometimes it only takes me 30 minutes to fix the problem and get home – but hardly anyone else can motivate and persuade him. He will not be bossed around. I don’t know what else to do.”

 Face to Face/ Phone ConversationsOther conversations occurred face to face or by phone simply inviting people with lived experience to reflect on their health care experiences and to share “what is working well and where are the gaps?”

Key Findings of Face to Face and Phone Conversations:

1. Majority of participants had positive experiences with family doctors supporting and diagnosing their dementia. Most participants felt there was good collaboration and communication between their family physicians specialist, geriatric psychiatrist, memory clinics and other supports.

  • “We have a wonderful family doctor. He really takes the time to listen and asks good questions. He got us connected with a Memory Clinic really early on and it made all the difference.”
  • “My husband lives with PSTD. When he began to get Alzheimers I was afraid it was going to be difficult - but we’ve had good experiences transitioning between the mental health world and the dementia health world with doctors are talking and sharing information.”’
  • “Before I was not getting any help or information, but two years ago we got a new fantastic doctor and he has made the right referrals, works with other people and we have testing every six months – and we don’t have to chase them.”
  • Families reported receiving good support and information from Behavioural Support Services and/or memory clinics: “After initially really floundering, now I know who to call for what information or if I don’t agree with what is happening with my husband and want to try a different approach.”
  • “It was our doctor who picked up on the dementia first – not us!”
  • “From what I am hearing from others, doctors are more aware of dementia these days. Seven years ago, our doctor just said “He’s getting old, nothing is wrong with him. It was only in his last year that we got a referral to Providence Care and learned about the Alzheimer Society.”
  • My wife had bi-polar all her life. Our family doctor was very knowledgeable about Alzheimer’s. There was good communication between doctors. They really worked with him like a team.”

2. Barriers Exist for People to Receive/Afford the Services and Supports They Need:

  • Issues exist involving gaps and inconsistencies in services when living on the border of two LHINS in areas that draw services from two regions (like Perth Ottawa/ Pembrooke and Peterborough, Colborne/ Brighton) –People don’t know what services are available in their region and would like consistency in services. “It is still so difficult to find answers to questions. “If it hadn’t have been for the Alzheimer Society we’d still be flopping around.”
  • “Programs exist that we could benefit from but are not referred because they are not technically our LHIN, even though they are only a few minutes’ drive.”
  • “Because I live in Colborne they want my husband to go to Peterborough, when really the program in Belleville will be so much easier for me to manage and is better suited to him.”
  • When you live in that middle space and they aren’t speaking to each other – it puts you in a difficult place.”
  • “Lost in the barren lands of _____ township.”
  • In between Champlain and South East there are lines, there are different services and it used to be the same.”
  • Fear of being “punished” for offering honest feedback to health care providers: “As you go through these different processes – you know what it is like when your meal arrives cold, do you really want to send it back to the kitchen? No way! It’s the same when you through all these different processes and bureaucracy, you feel like you’ve got to kiss up  even if it kills you because you don’t want to tick off the wrong person.”
  • “Our doctor has a receptionist I am terrified of. If I complain I will pay for it after. She’s the gatekeeper and she keeps all the cross dogs on the other side of the fence – she’s in a very powerful position.”
  • Confusion with acronyms and medical jargon: “There’s CCAC, CFC, CPP or CHC. Which is which?”
  • The Need for Dementia Friendly Communities: We need more family washrooms with bigger spaces for wheelchairs or walkers. We need places to be accessible and banks, restaurants and stores to be informed about dementia – maybe even use more pictures and have more knowledge.”
  •  “We need to tackle ageism and stigma and begin educating our community.”
  • “I need to be able to accompany my husband when he is getting xrays or appointments. It is always such a battle because people don’t understand dementia and that I am keeping him safe.”
  • “The worst thing is when you’ve ever so carefully convinced your husband to let you join him for an appointment without a fight and the receptionist says, “Oh, you don’t need your wife to with you do you?” The best thing is when the neighbours are so kind and bring him home when he gets turned around on his walks.”
  • “We recently lost our doctor. He’s moving to BC and we only had two weeks’ notice. He was kind enough to write me prescriptions to the end of the year, but I am very concerned. How am I going to manage this? Will we be made a priority?”
  • My mom is able to live independently due to strong and supportive community – it has been the secret to keeping her at home. People who understand the disease and still see her as a independent person with value and opinions and are willing to keep an eye for her weak spots. We need more communities like that.”
  • A need for services that come to their home. “It is so difficult for us to get mom anywhere because of her difficulties and we don’t drive.”
  • “Organizations sending mail to our home addressed to my husband is a real problem! He recently got a letter in his name acknowledging we were on the list for long term care. I found it in the garbage can later and was he ever mad. Things like that just make it so much harder for me to manage something that has to be managed so delicately at the best of times.”
  • There were several people whose spouses or parents were not working out in LTC due to behaviours: “What is going to happen to the people who just don’t fit? Is there no place for them to live meaningful lives? What about their caregivers? Who will help them?”
  • Costs of Medications and Parking: “My husband has been hitting out at staff and residents and is very anxious and confused. They have recommended a med trial that would cost $500.00 a month and it is not covered by OHIP. We just can’t afford this – but if it would help him how can I not?”
  • “We are spending $155.00 a month on meds for her that are not covered. That is a lot for us to manage.”
  • “When we have appointments at the hospital, parking is a real issue for us – especially when we have to then wait more than an hour for our appointment.”

3. We Need a Health Care System Navigator!:

  • “I had a background in another life in the social welfare field so you think, well, I know how to go through doors. Well, I found there was no doors or windows. Fortunately, we have a daughter who is a nurse. She came down here and took some time off work and got us an Occupational Therapist and found us the things we need– but everything was a fight.”
  • “What I see is long waits and no communication. I don’t feel I have anywhere to turn. I don’t think the information is forthcoming… I left 4 messages and then called 3 times in one morning and finally overstepped the woman by phoning someone who I know who works there just to get on a list for the adult day program. I was told you’ll hear from someone in two days – it has been three weeks and still no one. I was told the reason is that someone is on stress leave… “I am going to be going off on stress leave if someone doesn’t help me.”
  • “We have no occupational therapy people coming… I am a nurse and I worked as a supervisor for years and I know what dementia is…but there’s no help. I don’t know what I am supposed to do. The last time we went to our family doctor, we got a student. I am having a terribly frustrating time here…and I was in the medical profession!”
  • “The thing that scares me and I think about this all the time when I am with my mother – who is a full time job for me – People in this room are very lucky that they have loving spouses and kids that step up to the plate – in my family we all communicate and get along and agree when it comes to our mother – WHAT ON EARTH do the people who have no support network or trouble family situations – what on earth is happening to them?”
  • “There’s got to be so many in this province who have no advocates and no supports and it frightens me to death. It’s a very scary gap!”
  • “I understand the idea of keeping people in their homes as long as possible, but you can’t just say it – you have to make it happen.”
  • “It’s too hard for one person to navigate. There’s lots of duplication of services and pilot projects with different rules to qualify. Sizes of territories are too big for services to cover. “Not everyone has someone to open doors for them.”
  • “The problem is you have to ask….you shouldn’t have to ask for the help, or where the help is – because you don’t even know what to ask for. I need a list of information including: What to Expect.”
  • “When our geriatric psychiatrist left it took 6-8 months to find someone and we had to push to make that happen.”
  • “Doctors aren’t informed on what community supports exist – they refer to specialist but not community supports.”
  • “We NEED a system Navigator. Someone who puts people together…Oh, that’s your issue, that’s what you think is important …here’s a name and number to call and if they don’t answer your call…call me back.”

4. Positive Experience and Beneficial Programs:

  • “One of the programs that have been wonderful is the MINDS and SONG Sessions in our area!”
  • “Compassion and care are at the center of everything. If society was built on the same principles as The Alzheimer Society it would be wonderful.”
  • “There are some wonderful programs that really help us to live well…the adult day program, memory cafes and counselling makes it so much easier to manage.”
  • “The Alzheimer Society is a great support, meals on wheels, the day program – all are making a huge difference.”
  • “The Alzheimer Society is crucial. It is my number one support.”
  • Churches, Seniors groups, friendship clubs were all listed a crucial supports for care partners and family members – especially who live alone with spouses living in Long Term Care.
  • Friendly Call, Visits, Meals on Wheels and Community Care weekly phone calls were all seen as important to people’s sense of safety and wellbeing: “I am on my own now. What if something happens to me? Who would even know I was in trouble. It’s a little scary actually.”
  • “I like going to the day program. There are nice people there and we play interesting games and I get to talk with all kinds of different people.”
  • “The Adult Day program is keeping us going.”

5. The importance of Consistency, Education, Empathy and Compassion:

  • Education and Consistency “One of our biggest issues is that one staff person’s interpretation of aggressive behaviour or resistive behaviour is very different from another person’s. I have been with my husband where someone approached him from behind and startled him. He flung his arms up in the air and made contact with the staff. This was documented as if he was aggressive – that isn’t right. Another staff would have reported that completely differently and then these residents get labelled – or worse improperly medicated or even moved.”
  • Participants questioned whether all staff need better training on de-escalating behaviours and even have the same de-escalation system in place.
  • “I think there needs to be better regard for PSW’s. It’s not the home or agency’s fault, but they are overworked – expected to run home visits too fast – there’s no time to see the person as a person.”
  • “Those poor girls are run off their feet – no wonder they have no time to pamper.”
  • “I have a problem with the language used around my CCAC file – being told my file is “closed” is very unsettling. It gives me the sense that when I need them again (and I will) that I have to begin again. I would prefer one consistent worker. They might want to re-consider their wording, using “inactive, rather than CLOSED.”
  • “I really like our doctor, but I noticed when I make an appointment I am only allowed to talk about one problem and often get an intern. That one issue could be from multiple issues. We need to be seen as whole people, not just parts of people.”
  • “Communication, Consistency, empathy are so important, especially when answering the phone. That first phone call is so important – I’ve talked to people who are lovely and I’ve talked to someone who has a script – but I guess at least I got to talk to someone.”
  • “There’s no day off for my wife (as my caregiver).”
  • “We had very good support from PSW’s and home care with the consistent staff – “They were amazing!, they really were.”
  • “Now they have made sure we have the same two PSW’s each time things are great, but before there was a lack of consistency and strange girls – it was very frightening for my wife and caused more stress for me than if I had just handled things on my own.”
  • “It was difficult before we got the same staff. They were showing up at different times – arriving at 11 or 12 noon to get her dressed. I didn’t know if I was coming or going.”
  • Empathy: “My wife used to be a nurse and I was so impressed with her nursing home. As she transitioned into the home they gave her the “job” of helping them check people’s vitals, tying in her old life into her current one and giving her a sense of purpose.”
  • “It is the most difficult thing I ever had to do, but I am very grateful for the Long Term Care home – staff are kind and loving, there is good food and it is a clean, intimate environment.”
  •  “For me the system is working well right now. I have a great doctor who makes referrals, I am linked with the Alzheimer Society and have some home support – but I am just completely exhausted all the time. It’s been five years and it is just all consuming and lonely.”
  •  “Just because they are in a long term care home doesn’t mean your role is done. It’s still so exhausting. 90% of the time the staff are really amazing and really show experience and patience.”
  • Driving? – is there better way to deliver news that people are losing their driver’s license? – This conversation really needs to be front loaded with dignity and a lot of pre-warning. One couple shared that they were totally SHOCKED when her husband lost his license because it happened at the same time they were just learning about his dementia. Should it be the doctor or specialist who takes away the license? Will this news make it people avoid going to appointments they desperately need to be at.

An Invitation to SE Ontario health care planners and providers:

Being part of The Lived Experience Resource Exchange simply means that you are willing to receive bi- monthly emails from Sharon directing you to our “Resource Exchange” page findings – which include a summary of the themes of the conversations she has had with participants of the SE Ontario Lived Experience Network. Information will be as general as possible and no names will be shared of either lived experience persons, medical personnel or organizations.

Our request from you is if you read something that you feel pertains to your organization or service that you will share that information as you feel is appropriate. We also ask that you will partner with us by emailing specific questions you may have of our network for our live chat events. 

It is our hope that you can learn from people who are living the journey and that these conversations will help inform how services are provided, designed and evaluated. The Lived Experience Network is not a complaints department, rather an incredible resource with real people who want to share both their experiences – good and bad – so we know what is needed.

 

Thank you for your consideration,

Sharon Osvald
Lived Experience Network Coordinator

Behavioural Support Services, Providence Care Seniors Mental Health
in partnership with the Alzheimer Societies of S.E. Ontario

Email: sosvald@alzking.com
Phone: 613-475-9943

BELOW You will also see the Findings of our 2013-2014 Study of over 200 lived experience persons in SE Ontario – highlighting 6 of the Key Priorities Valued by people and their care partners.

Findings Report

"The experience has been a relief, like opening the wound to let out the infection (that I really wasn't so aware was in there), so that it may finally heal. "  quote from a Lived Experience Network participant

What is  the Lived Experience Network Findings Presentation: From November 2013 - June 2014, Sharon Osvald compiled stories and input from face to face lived experience advisory meetings, phone calls and virtually via the Lived Experience Café discussion forum  and live chat events.

At the end of June 2014, she completed a report based on 200 conversations and submitted it to my Behavioural Support Services team at Providence Care Seniors Mental Health. The BELOW link outlines the findings of those conversations. It is our hope that you will be able to implement these six key priorities as templates for change as you provide,plan and evaluate the services you provide to older adults living with dementia, mental health, substance use and/or neurological disorders as well as their care partners. 

How to View the Lived Experience Findings Presentation: To view the presentation click on link below. Then click on the picture/slide on the bottom of the screen scroll across to read each slide. Please be sure to pay close attention to the comments – that is where the examples and quotes were included - As always, we invite your feedback.

Click Here to view the presentation slideshow.

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