caregiver

Care for the caregiver

On Feb. 14, Jewish Seniors Alliance presented the third of its 2021/22 Empowerment Series. The event – Care for the Caregiver – was co-sponsored with L’Chaim Adult Day Centre and the Council of Senior Citizens’ Organizations of British Columbia, and the program was presented by Royce Shook of COSCO’s Health and Wellness Institute and Leah Deslauriers, administrator of L’Chaim.

Gyda Chud, co-president of JSA welcomed everyone and thanked the agency’s partners for participating.

Barb Mikulec, vice-president of COSCO, explained that COSCO is a nonprofit group for seniors helping seniors and that its Health and Wellness Institute presents many free workshops on seniors issues. She introduced Shook, who has been in the field of education for more than 40 years and has worked in curriculum studies. He advises or serves on various seniors committees/councils.

Shook spoke about the stress and burnout experienced by caregivers. In Canada, he said, there are approximately five million unpaid caregivers supporting family members; an economic value of $6 billion to $9 billion.

Caregivers provide both physical and emotional support, he said. This role could involve home management, such as bill paying, grocery shopping, driving to appointments, cooking and cleaning. For the caregivers, they may benefit from a sense of personal satisfaction and a sense of purpose. They learn more about their inner strength and gain a purpose in life by the act of helping. They can help pull family and friends together, but there will be changes in family dynamics and relationships. At times, the recipients of care may be resentful at their loss of independence and privacy.

There is an emotional impact on the caregiver in that they may worry about not being strong enough to carry the load. At the same time, they may avoid asking for help, and this could lead to burnout, Shook warned. There are a number of warning signs to watch for, such as a loss of energy, the neglect of personal needs, trouble relaxing, irritability with the senior and isolation. To avoid burnout, he advised caregivers to learn about the disease or condition plaguing the senior and take any help that is offered for that condition. Know your limits and specify them to others, i.e. family and friends, sharing the burden with them. Make sure to have regular breaks, and talk with others about your feelings.

Communication is very important, he said. Keep up to date on information from the health team. Let the recipient of the care lead, try to be a good listener and maintain eye contact. Always remember that the person has changed, so avoid giving advice or quarreling over minor issues. Do not say, “I know how you are feeling,” but instead say, “How do you feel?” Have a consent form so you can accompany the recipient to the doctor and have questions ready and take notes. There are three major areas of decision-making that need to be arranged with the recipient and not for them, said Shook. These are medical, the need for a representation agreement; legal, power of attorney; and financial, also covered by power of attorney.

Always remember to take care of yourself by accessing, for example, adult day care for respite, home help and community support groups. There is no such thing as a perfect caregiver. Always remember to respond to the present situation and not to the person you once knew. If you don’t care for yourself, you can’t care for others, he said.

After Shook completed his presentation, Eireann O’Dea introduced Deslauriers, who, prior to joining L’Chaim five years ago, was the coordinator of the seniors program at the Jewish Community Centre of Greater Vancouver. She has also been active in seniors housing issues and is a family caregiver for her parents.

L’Chaim is one of 12 adult day centres in the region funded by Vancouver Coastal Health. Referrals are made by a caseworker at the health unit and the programs provide stimulation for the recipients and respite for the caregivers.

At L’Chaim, clients arrive about 10 a.m. and have a light breakfast after which the programs begin. The morning may consist of word games, followed by news and a discussion. A full lunch is served during which socialization is encouraged. The afternoon consists of a guest speaker and/or a musical program. Clients are usually picked up about 3 p.m. Any pertinent information is passed on to the caregivers.

L’Chaim is similar to other centres but it is culturally Jewish. It is funded for 13 clients/day, three days/week and costs $10/day. More information is available at lchaim.ca.

A list of resources for caregivers will be made available on the JSA website, jsalliance.org. Also watch the website for information on the next Empowerment program, April 26, in co-sponsorship with Jewish Family Services, and the Spring Forum on May 15.

Shanie Levin is program coordinator for Jewish Seniors Alliance and on the editorial board of Senior Line magazine.

The need to support caregivers

Rick Tash is the primary caregiver of his wife, Bambi Fass, who is dying of cancer. (still)

A new short film by Dr. Jessica Zitter and Kevin Gordon gives an intimate look at the toll involved in caring for a loved one at the end stages of their life.

Zitter happened upon palliative care, she said, before “anyone even knew how to spell the word ‘palliative,’” after she had “finally realized I’d been feeling a lot of burning walls of stress in the way that I had been practising medicine.”

A physician in Northern California, Zitter said, “I’d been treating patients like objects on a conveyor belt, instead of as people, and then began to practise, for the next two decades, palliative care and critical care at the same time, providing me with a strange vantage point within the world of medicine.

“I was inspired to write and share stories about what’s going on in hospitals, and about how we’re treating the seriously ill among us … and I also continue practising medicine.”

Zitter at first opted to educate the public via books, but then she encountered the power of film. “I realized, all these messages I’m trying to get across to people – about medical culture and about what we want to think about differently – they’d lend themselves so well to film, to show the experience of the patient. If a picture is worth 1,000 words, I realized that a movie is worth much more than 1,000 pictures.”

photos - Dr. Jessica Zitter and Kevin Gordon are directors of the short film Caregiver: A Love Story — Dr. Jessica Zitter and Kevin Gordon are directors of the short film Caregiver: A Love Story. *(photos from Jessica Zitter)*

In the 24-minute Caregiver: A Love Story, the audience meets a woman Zitter met at synagogue, Bambi Fass, and Fass’s husband, Rick Tash. Fass was dying of cancer and Zitter offered palliative care, but was refused, until Fass’s condition became dire.

“She called me and she was extremely sick and had deteriorated,” Zitter told the Independent. “She said she needed help and, that day, we got her into hospice care. She was so, so sick and in so much pain and suffering. That day, her life turned around for the better. All of a sudden, she was living again.”

That is when Zitter asked Fass if she would be willing to be filmed. “She replied, ‘I want to help someone else … if you want to write about me or anything.’ She knew about my book. That’s when we got a film crew. I thought the film would be about her, an amazing woman. What I didn’t realize then is that it would actually end up being about her husband as the main focus. I thought he was just going to be the guy who opens the door for the hospital, but he ended up being a central character.”

Fass had sat a few rows in front of Zitter at their synagogue. “She had a long braid of hair,” recalled Zitter. “I’d always see it from behind. I didn’t know her really, but I did wonder…. She was very, very sick…. I knew she was, because she had brain metastasis. She was vivacious and funny. She was staring her death in the face and she still had a sense of humour. She was a hero, a really fascinating character.”

It took almost two years to put the movie together and to fully grasp the importance of sharing it with the world.

“I never realized – the invisible public health crisis, family caregiver burden – how much this story needed to be told,” said Zitter. “The original intention I had for this film was to show how, once you make the right decision, everything will be OK…. I then realized how naïve that message was. It’s not that easy. You can make decisions that feel like they’re going to be the right choice for the patients, but will it be the right choice for the family as a whole? We have to be much more holistic when we think about our patients. It really needs to include our families as well.

“Even in a loving, caring and organized community like ours, we aren’t necessarily focusing on and supporting the family caregivers among us,” said Zitter. “And there are a lot of family caregivers – rising numbers – with very little support. An organized community has been unable to attend to this man [Tash] who is deteriorating in front of our eyes, because they don’t know what to do with him. We’re not primed to think about caregiver burden as an urgent task.”

Zitter found that her synagogue had no committee to assist family caregivers, and her hospital community was also not paying attention to caregivers.

“They’re an invisible workforce that we don’t pay attention to,” said Zitter. “We don’t attend to them, we don’t think about them, we don’t identify them, we don’t include them in the conversation. But they’re a huge part of our workforce … and we’re just ignoring them.”

Zitter’s hope is that people from various communities, including synagogues, churches and mosques, will watch this movie and then establish a workshop for family caregivers and identify ways to support caregivers. To that end, she has created a keynote message and an hour-long program to raise awareness of this crisis and do something about it.

“The best place to start is at caregiveralovestory.com,” she said. “You can go on the website and see public screenings that are coming up and other ways to watch the film yourself, whether bringing it to your organization or watching it privately.”

Currently, Zitter is working on a film about deathbed spirituality and prayer, as well as on a movie about Ethan Sisser, a Jewish Buddhist.

“Ethan was an amazing, amazing guy,” said Zitter. “He died about two or three months ago. He has a community following on social media. A lot of young people were just so moved by the way he viewed his death and the bravery and beauty of his final days…. We’re making a film about him, which will be beautiful and, hopefully, you’ll see that soon.”

Rebeca Kuropatwa is a Winnipeg freelance writer.

Dementia care is self-care

Karen Tyrell, founder of Personalized Dementia Solutions, spoke recently at an online event hosted by Beth Tikvah and the Kehila Society. (photo from dementiasolutions.ca)

To care for people with dementia, caregivers must first ensure they care for themselves. That was a message from Karen Tyrell, an expert with 25 years’ experience assisting people with dementia and those who care for them.

May is caregiver awareness month and Tyrell, who founded Personalized Dementia Solutions, was speaking at an online event May 19, sponsored by Beth Tikvah Synagogue and the Kehila Society of Richmond. Tyrell, who is also author of Cracking the

Dementia Code: Creative Solutions to Cope with Changed Behaviours, teaches people how to deal with dementia in loved ones through one-on-one and group consultation.

Common symptoms of dementia include impairment of memory and thinking, judgment and communication problems and personality changes.

Tyrell noted that the stress caused by caregiving for a person with dementia can result in physical and emotional health issues, some of which themselves can exacerbate the causes that bring on dementia. So, it can become a cycle in families.

She offered a range of strategies, such as breathing exercises, for caregivers dealing with stress. She also emphasized the need to share your concerns with others before they evolve into a crisis.

“As soon as you notice your stress levels are starting to climb and you’re having a hard time to breathe because of what you’re going through, please reach out, tell someone,” she said. “Reach out to your community, reach out to your doctor, reach out to a counselor, reach out to the Alzheimer’s Society in the community that you’re in. Reach out to someone to tell them, because, when you talk about it, then others will give you suggestions on what you can do.”

She urged caregivers to accept help when offered.

“Please don’t think that you’re going to be fine or that you’re going to be an inconvenience to others,” she said. “You need that help. Nobody can handle caring for someone with progressive dementia all by themselves. It’s not humanly possible from the beginning to the end.”

Another tip is to have realistic expectations.

“If you are thinking, I can do this all on my own because I’m the wife and this is my duty, in some ways, I would tell you, that’s great. You’re doing great,” Tyrell said. “But is it realistic that you can do this all on your own?”

Setting boundaries is another key.

“It’s hard to say no to people, but, when you’re setting boundaries for what you will and will not do, and say no to certain things, then you’re going to take better care of yourself,” she explained. For example, some people accept that they can continue to care for their loved one at home until, for example, the person becomes incontinent more than once a day, or until the person with dementia is no longer able to go to their twice-a-week adult day program, giving the caregiver a short respite.

An inability to get proper sleep is a dangerous cycle, Tyrell warned. Exhaustion on the part of the caregiver is a recipe for disaster. Melatonin for the caregiver or the person with dementia could help, or a paid worker to sleep on the couch for a limited period in case they are needed, she said. If possible, the caregiver might get away for a couple of days or the loved one could go into a few days of respite care.

Developing negative emotions and responses is understandable, she added, but finding ways to be positive is critical.

“Try to find some of the positives of your situation,” she said. “One fellow said him and his dad never got along all of their life, they had a really rocky relationship, but when he started to develop dementia, his personality changed and they became best friends. He looked at the positive: ‘It’s not fun to see my dad go through this but I found something good in this.’”

Laughter is a medicine, she added. Remaining social – even via the computer if the pandemic makes in-person socializing difficult – and having laughs with friends can go a long way to keeping a caregiver healthy.

Meditation, yoga, prayer, relaxing exercises or activities are also important tools.

“Exercise is proven to help us burn adrenaline,” she said. “So, when you’re stressed, go for a walk, try to burn off some of that adrenaline. Move that body. Walking is a great exercise.

“Eating healthy is helpful,” she added. Dark green vegetables and all sorts of berries, but especially blueberries, have antioxidants that help slow the aging process.

The presentation is available for viewing at btikvah.ca.

Providing care and support

Jamie Kinaschuk helps caregivers in various ways. (photo from Jamie Kinaschuk)

“When somebody faces a situation of becoming a caregiver, they can embrace it and see it as a sense of purpose for the person they’re caring for, or they can resent having to do it,” Jamie Kinaschuk, a social worker with A & O (Age and Opportunity) Inc. in Winnipeg, told the Independent.

“When you embrace it, you can feel that the tables have turned – from the time my parents looked after me to, now, me looking after them – and you can see this as something you want to do, are proud to do. That makes it easier.

“On the other hand, you can have a child or a spouse who’s just not ready and doesn’t want that responsibility. They may have been designated by other family members.”

In some situations, said Kinaschuk, the ultimate caregiver is the closest in physical proximity to the family member needing care and, as such, other family members expect them to carry the load of caring, not taking into account that the caregiver has their own life, family, job and/or other commitments.

Being a caregiver takes a toll in many ways, including that their life has to be put on hold to a certain extent.

“Somebody might become a caregiver with some resentment … or, maybe, the relationship between the caregiver and the recipient hasn’t been the greatest and it just happens that they live together,” said Kinaschuk. Regardless of the circumstances, “there is an impact on you physically, mentally, emotionally and financially.”

The care given varies by recipient. For some people, minimal help is needed – things like cooking, house cleaning or doing laundry and shopping. For others, assistance could be needed in bathing or grooming, getting dressed or using the toilet. Often, needs change over time and a caregiver is left to find ways to fill the new requirements of the person for whom they are caring. As a caregiver, one must learn to adapt.

“Maybe they have to locate a different doctor for a different health issue that has arisen,” said Kinaschuk. “Maybe they have to apply for home care, to locate medical supplies or transportation. Maybe it’s come to a point where they can no longer transport them, so they need something like Handy Transit.

“Sometimes what adds to the difficulty of being a caregiver is, if you’re a male caregiver, having to do the personal care if you’re caring for your mom. That could be a struggle – dressing, bathing and toileting.”

Ideally, caregivers will have their own support system, people who can provide some relief. Staying healthy is the most important thing a caregiver can do, not just for themselves but also to not become a further burden on the family.

Kinaschuk, who started his career with Winnipeg’s Jewish Child and Family Service in 2000, runs a caregivers support group.

“In my group,” he said, “we see a lot of caregivers struggling to access resources or, because they don’t have any other supports, they’re really struggling with the situation. There are times where, I’ll give you an example, a caregiver is struggling because their sibling doesn’t understand what they’re going through; they don’t know how difficult it is. That other sibling may say, ‘You can deal with it’ and ‘That’s not a problem.’”

Kinaschuk recommends having a heart-to-heart conversation with the other siblings or relatives to inform them about what’s going on. If a conversation is not an option, a letter can work wonders in getting the message across. “This way, they can read it and hopefully not rip it up, and then read it again,” said Kinaschuk. “And maybe they’ll realize that, ‘Yeah, my brother or sister is going through a lot. I better start supporting them.’”

One of the concerns is that a caregiver may take their frustrations out on the care recipient. Good communication with other family members and their support diminishes this risk, as does attending a caregiver support group. When possible, a talk about boundaries could be beneficial for all involved.

“Both the caregiver and the recipient need to realize that there are boundaries,” said Kinaschuk. “They both have boundaries.” Caregivers, he said, have to be honest with themselves and the recipient – be up front about the fact that they can only do so much.

“The recipient needs to realize that the caregiver needs time. They can’t be demanding 24/7 care,” he said. “They have to be respectful, to respect each other. If the recipient is too over-demanding, it drains the caregiver.”

If all involved can embrace the situation and find the positives, such as having an increased sense of purpose, then, being a caregiver can be an uplifting, life-changing experience.

“From the support group perspective, it’s all about empowering,” said Kinaschuk. “When people attend the support group, first of all, that’s where you see that you’re not alone – you see that other people are experiencing similar emotional, physical and mental situations.”

In his sessions, Kinaschuk asks that people not give advice, but rather share their experiences, in the hope that others can take what information they need to find a solution that fits them. At some meetings, he invites professionals – from the regional health authority and groups specializing in Alzheimer’s and palliative care, among others – to teach the group about different aspects of providing care.

Rebeca Kuropatwa is a Winnipeg freelance writer.