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Washington Post
20 hours ago
- General
- Washington Post
Asking Eric: Parent of disabled son is tired of well-meaning advice
Dear Eric: My 30-year-old son is severely physically disabled due to a debilitating muscle disease. He requires 100 percent assistance with all life functions. He does not have any cognitive disabilities, is very intelligent and earned a bachelor's degree. My husband retired a couple of years ago and is his main caregiver. People who are likely well-intentioned, ask how he is doing and when we respond that he is doing well despite the progression of his disease and that he handles his very challenging situation with grace and little complaint, they then follow up with questions about what he is doing, does he have plans to work and then oftentimes even start suggesting jobs that he could consider. These people have no idea the challenges that he faces every day, and my husband and I feel that, as long as he is happy and satisfied, that is all that matters. We try to explain that having a job would create a lot of stress for him and would require my husband to be with him to assist at all times. Additionally, one item that we do not feel the need to share is that if he earned basically any more than minimum wage, he would lose his benefits. We don't think that we owe anyone an explanation and despite trying to briefly and kindly respond to their questions, they inevitably continue to press on about the topic. We appreciate people asking about him but would also appreciate it if they would accept our response and move on to other topics of conversation. How can we reply to these insensitive interrogations without coming across as defensive or angry? — Done Explaining Explaining: One option is to offer less in the way of an update. A simple 'he's doing well, thank you,' gives the well-intentioned inquisitor fewer avenues for offering suggestions. Another option is to kindly but firmly remind people that they don't know what they're talking about. 'Oh, we've thought through all of that and more. Trust me, this is exactly where we need to be. We've had 30 years of practice navigating this, so we've become experts. It would take 30 years to catch you up, and I don't want to bore you.' You're correct that you don't owe anyone an explanation. So, whichever path you choose, also know that it's perfectly fine — and not at all defensive — to interrupt a suggestion you never asked for and change the subject. Dear Eric: My mother and her caretaker came to visit for two days. My mother has some form of dementia, even though we all feel that at times she plays it up. My mother never missed an opportunity to hit or slap me as a child and once even broke a wooden fanny wacker over my head, which really enraged her. I think you get the picture. Anyway, we went to dinner, and she looked at me and said, 'Oh look, a stray hair,' and pulled it out of my head! She did not try to move it or let me move it over. It was especially upsetting for me because I have been trying to grow my hair out after I lost it all to chemotherapy. I have made it clear to her caregiver that I will not be coming to visit her anymore. I feel that she has overstepped my physical integrity, and I get the willies whenever she tries to touch me. During my last visit with her, there were times that she did not know who I was, and I did not feel safe with her. Am I wrong after this incident to not want to see her again. Despite everything, I have always been a dutiful daughter, but I just feel that she crossed a line this time that I can't deal with anymore. — Hurt Daughter Daughter: Your mother's abuse in the past is inexcusable. You don't have to subject yourself to it in the present. You can and should prioritize keeping yourself emotionally and physically safe. Figure out what boundary feels right. That might mean no more physical contact, only phone calls and video visits. This is not cruel abandonment — she has a caretaker and, from your telling, her past behavior and her present capacity may make in-person meetings dangerous for both of you. Talk to her caretaker about the boundary you're setting and get the caretaker's help to continue to support your mother in whatever way feels safe without compromising your own well-being. I know that this phase of life takes a lot of time and mental energy, but when you do find space, please talk to a therapist, counselor or trusted friend about what you experienced. What happened to you wasn't right and you didn't deserve it. You deserve the space and time to process it. (Send questions to R. Eric Thomas at eric@ or P.O. Box 22474, Philadelphia, PA 19110. Follow him on Instagram and sign up for his weekly newsletter at 2025 Tribune Content Agency, LLC.
CBC
a day ago
- Health
- CBC
B.C.'s long-term care bed shortage forcing family members into caregiving roles
A new report from B.C.'s seniors' advocate says the need for long-term care beds in the province has gone from a shortfall to a crisis. Wendy Johnstone from Family Caregivers of B.C. says caregiving has fallen onto family members as a result, and that they need more support.
The Guardian
a day ago
- Health
- The Guardian
‘There are times I feel I hate them': how siblings can clash over end-of-life care for elderly parents
When Anna's* parents came to visit last year, she was determined to give them a relaxing holiday in her Queensland beach town. She'd been worried about them – her Mum had been diagnosed with Alzheimer's disease and her dad had been having frequent falls. For years she'd been trying to get them to talk about whether they needed to move to aged care, to assess their financial situation and face what was coming next, but they'd dismissed her, saying they were fine. On the first day of their visit, Anna's dad fell and broke his leg, badly. 'He went into hospital and Mum came and stayed with me. I realised what they'd been covering up. Mum was so confused she was walking around the house without any pants on, which was confronting for my teenage boys. She didn't know what day it was and she couldn't read a clock. Then the hospital told me Dad was withdrawing from alcohol and had some dementia.' Anna moved her parents to a nearby aged care centre while her sister packed up the family home. The sisters had always had some issues in their relationship but the stress of seeing their parents so vulnerable, of selling the house and working through the financial situation, led to harsh words and hurtful accusations. Anna's sister told their parents they were arguing. 'They were distraught. It was awful. I had to set some boundaries, and I just stopped all communication.' Caregiving can expose cracks in families and widen them to caverns. Since I've been working in this area, I've heard many stories like Anna's and spoken to experts about how families can fall apart just when they need to come together. There's often resentment about the burden of care on one child, conflict around the pressure of making huge decisions and the horror of the 'sad-min' of form filling. Issues around money are particularly messy. And families who have had past conflict and trauma are particularly at risk. Sign up for a weekly email featuring our best reads Research released on Thursday by online care platform Violet reveals the depth of anxiety surrounding Australia's ageing population and gives insights into families who love deeply but plan poorly. Its poll of a thousand people found more than three-quarters of Australians are concerned that caregiving will damage their relationships with family members and 70% worry about managing past family conflicts and unresolved trauma when caregiving. Previous studies have shown 45% of caregivers experience relatively serious conflict with another family member, usually because one sibling tends to carry the heaviest load. Each statistic tells a unique and personal story of relationship breakdown, resentment and real anguish. But the consequences affect us all, because the conflict often plays out in publicly funded late-stage hospital care. A study published in the British Medical Journal in 2019 found patients whose families are in conflict were nearly 10 times more likely to receive unbeneficial treatment towards the end of their life. Ken Hillman, professor of intensive care at the School of Clinical Medicine at the University of New South Wales, has been warning about the cost of misaligned care in the last moments of life since the 1980s. His most recent research in the Internal Medicine Journal cited overtreatment as a major contributor to decreased capacity of hospitals, reduced ability to conduct elective surgery, increased attendances at emergency departments and ambulance ramping. Hillman says family conflict is the biggest cause of non-beneficial treatment at the end of life. 'I'm not too sure if it's guilt or existing conflict or just not facing the problem, but one sibling will often demand life support because they want to believe in hope or a miracle.' Professor Imogen Mitchell also sees the cost of conflict in her job as an intensive care specialist at Canberra hospital. She says most families haven't even thought about whether they'd want their loved one going to intensive care and this can lead to panic. 'Often sons are more wedded to keeping them alive, saying, 'She's a fighter', whereas it's often a daughter who does more of the care who will say 'I'm not sure Mum would want all this.' Often, a new wife and the children of the patient will be in conflict – the wife wants all treatment that is possible, and the children will be more pragmatic. Meanwhile, we hold a patient in suspension while family members get on the same page.' Often this can take time because all sorts of family issues can play out. Mitchell urges people to know their loved one's wishes before they are in a hospital corridor or get a call from a specialist. Sign up to Five Great Reads Each week our editors select five of the most interesting, entertaining and thoughtful reads published by Guardian Australia and our international colleagues. Sign up to receive it in your inbox every Saturday morning after newsletter promotion 'I could count on one hand families that have had this conversation ... it can bring a family together if they all know what would Mum want.' Professors Mitchell and Hillman recommend comprehensive planning for life's final years. Families need guidance to navigate complex medical decisions and care coordination. Different states have different recommendations for health directives, but clearly we need better guidance and fundamental planning tools. Parents hate it when their children fight – setting the rules around ageing with clear direction and communication may be the best gift they can give their children and themselves. Not all conflict can be avoided, but some plain old appreciation for those who do the hard work in caring is a good place to start. Sharon* in Sydney spends half her week driving her father to appointments, cooking his meals and cleaning his flat. She does it with love but concedes the lack of the slightest bit of interest from her two siblings has lessened her love for them. 'Just an acknowledgment and a pat on the back would go a long way. There are times I even feel I hate them.' Often healing old wounds in families is too difficult. But at least putting them aside or not developing new divides is the least we can do for those people who gave us life. *Names have been changed Sarah Macdonald is a writer, broadcaster, an advocate for the sandwich generation and an ambassador for Violet organisation
Daily Mail
5 days ago
- Health
- Daily Mail
I gave up my dream at 29 to look after my sick mom - three things no one tells you about caring for a relative
Simone Heng was at the peak of her career in Dubai when she got a phone call from her sister while she was working a giveaway at the mall for her radio job. 'Simone, where are you?' her sister asked from Perth, Australia. 'I think you should come home.' Her mother had a stroke related to her rare genetic condition and was suffering from paralysis. They had found her mother lying at the bottom of the shower. They had no idea how long she had been there. 'I'll never forget that,' Simone, 41, told Daily Mail. 'I remember just that guilt of like - how long was she at the bottom of the shower? How long until someone knocked the door down?' As she hopped on a flight from Dubai to Perth, she knew her life was about to change. That trip in 2013 was only supposed to be two weeks long, but when she looked at her mother lying in her hospital bed, looking gray with eyes unable to focus and suffering from arm spasms, she knew things were not going to get any better. 'I remember seeing her in that state and going: "Your life is going to change forever now,"' she told Daily Mail. 'I'm the shield now, and I think that's really when we, as children, become our parent's parent, and the role flips.' At 29, Simone, an international broadcaster who worked at Virgin Radio Dubai, embarked on a 1.5-year journey of caretaking, one filled with such isolation and grief that it knocked her off her feet. Now, she has penned a book called Let's talk About Loneliness and hopes to warn others of the unexpected toll of caring for an ill parent. Simone packed her bags and headed back home to Perth while they moved her mother in a care facility. Despite the help, Simone and her sister were left to deal with their mother's belongings at her home and figure out the logistics of unexpectedly having to care for their parent. The sisters split the work. Her sister would focus on the logistics of care - physiotherapy costs, arranging massages, and subsidizing help - while Simone would take care of the emotional aspects, such as bringing her mother happiness. But the first obstacle Simone faced, however, was being in charge of downsizing her mother's home. And it's now the foremost thing she'd tell others going through the same thing: 'Number one, if your parents are still cognitive and you can convince them to downsize, please do it. 'The last thing you need is the logistical nightmare of cleaning that house when they're already incapacitated.' Despite her mom being in a wheelchair, her mind was there and it held fast to her beloved items, causing 'friction' between the mother and daughter. 'The brain hadn't degenerated yet. The body was in a wheelchair, but the brain was fighting about the belongings and things like that,' Simone told Daily Mail. Your life is going to change forever now. I'm the shield now, and I think that's really when we, as children, become our parent's parent, and the role flips Author Simone Heng The second thing she found herself unexpectedly experiencing was watching her mother go from a fully capable adult to needing the same level of help as a child. 'I saw my mom's nappy being changed in front of me,' she said. 'You have to prepare yourself for when that change happens, when they become the baby - especially if you have very authoritarian parents like I did with mom.' 'You emotionally need to prepare yourself for that loss of dignity and watching them kind of melt down. And I wish I had been prepared for that. I wish someone else had said: "Look, you need to just watch out for this."' But her biggest problem, and third thing she warns people about when they are beginning to look after a relative, is the isolation of caregiving. She woke up every day thinking only of her mom and her needs. As time went on, Simone lost herself. She stopped putting on makeup and stopped caring how she looked. 'By the end of the one and a half years, I just completely didn't even look in a mirror anymore,' she said. And for Simone, who wasn't even 30 at the time, she felt so alone in the world of caregiving. Only now, as her friends enter their 40s, are they beginning to experience what she went through a decade ago. And unlike death, where the heart heals with time and the physical burden gets lighter, it doesn't with chronic illness. 'You see it at the beginning with - when dad passed away, people brought food. They understood that someone had passed away. And eventually it's finite,' she explained to Daily Mail. 'When someone has that long-term chronic illness, there is really no endpoint. And so the community is amazing at the beginning, but really long-term, it's on you as the children.' And her own family perceived her as young and vibrant and fully capable of handling the pressures and duties of caretaking. But all it did to her was make her feel 'incredibly, incredibly lonely.' She still, to this day, feels guilt for the resentment she felt at the time and grieves for the version of herself that she lost. In Dubai she was a highly successful broadcaster whose face was easily recognizable in the emirate. She once featured on a billboard for Dove outside the 7-star Burj Al Arab hotel. 'I grieved it for years afterwards. I think in the moment you're just in fight or flight, and I was culturally conditioned to think that this is what good Asian daughters do, and this is unquestioned,' she said. 'And it had been taught to me from the time I was young. My mom had said it to me over and over again: "You know we don't put our people in homes." This is what you do. 'And so I was unquestioning in that kind of obedience of programming. But it wasn't until I realized how much the whole experience changed me at a cellular level, and when I went back to work.' Simone fled Perth for Singapore after a year and a half. She had hit her breaking point and a psychiatrist told her she had to leave before it was too late. 'My mental health got really bad,' she said. 'The psych just said: "You know you're not born to do this," and that's why [I left]. 'I still carry guilt this day that I'm not made of better stuff, more selfless stuff, and he's like: "You know, you've got to put the face mask on. You're a creative, and you need to go back to a place where you can do that." She chose Singapore due to its proximity to Australia, allowing her to return every 90 days to visit her mother. Her sister, who still lives in Australia, now does the brunt of the caregiving, but for Simone, this system works better. 'It's still difficult, you know, undoing that guilt and that programming,' Simone told Daily Mail. From 2015 to 2017, Simone went to therapy to work through the experience and was able to come out on the other side. Now, she advises children who become caretakers to join support groups and to give themselves grace for the guilt they feel. 'Give yourself grace,' she said. Despite how difficult the experience was, it gave her a perspective that is now her 'north star.' 'No one is talking about their job, how much money they earn, like what watch they have,' she said. 'People are just pining away for human connection. And I think that that was very inspiring to the work that I do now, we're really just here for connection and a good time. 'And that, that I carry every day. It kind of is the north star of how I make all my decisions.'
Yahoo
6 days ago
- Health
- Yahoo
'I'm an unpaid carer for my mum in Greenwich - it's like grieving your own life'
Seven years ago Denise Wilkins was a successful accountant who was regularly travelling across Europe for her work. Her career achievements were remarkable considering she had been simultaneously caring for her mum, Maureen Shields, since the age of 14 when she started to lose her sight. But in 2018 everything changed. Maureen woke up one morning and couldn't move. She'd developed osteoporosis, a condition which weakens bones and makes them more susceptible to fractures. Maureen had spinal fractures that prevented her movement and caused her excruciating pain. Denise was forced to give up the career she'd worked so hard to build to look after Maureen full-time. Denise, now 54, said: 'It's almost like grieving the loss of your own life. You're grieving because of the loss of what's happened to somebody else, and seeing somebody in constant pain is hard. "It's also just incredibly mentally and emotionally wearing having to not only deal with your own life's disappointments and problems, but also the emotions that they're going through.' Denise lives with her 89-year-old mum in a flat in Vanbrugh Hill, Greenwich and has said the experience has had a profound impact on her mental health and wellbeing, to the point that she's been prescribed antidepressants to cope. Never in doubt was it that she would be there for her mum, but the lack of support from the government for unpaid carers like her has led to burnout and a feeling of being abandoned. 'There's a lack of support, a lack of understanding, and a lack of recognition,' Denise said. 'I just don't think people really understand just how all time consuming it is, and to be honest, it is very emotionally draining.' After the osteoporosis diagnosis the family moved from Loughton in Essex – their home for over 20 years – to Greenwich in order to be closer to King's College Hospital and because they couldn't adapt their Essex home to Maureen's needs. Maureen had a series of operations which stabilised her condition, but it left her with virtually no mobility. Denise has looked after her mum on a near daily basis since then as she can't afford to get paid carers in to help. She praised the work the NHS did in treating Maureen, but was critical of the provision for care that is provided afterwards. She said: 'There is just this assumption that the family's going to step in. There is nothing wrong with that, but then you realise there is very little support out there to recognise what you've lost in your life. It was life-changing for her, but it was also life-changing for me.' Denise felt that since she started looking after her mother in 2018, she has massively missed out on living her own life. She said: 'I mean not just financially, career-wise, socially, but all hobbies and interests have been completely put on hold. Even things like your own fitness levels and personal relationships. 'You feel like it's not just the person who needs to be cared for whose life has changed. It's almost like you've got an illness too.' Denise said she even has trouble attending to her own medical needs due to the lack of available appointments. If she's not able to find someone to look after her mum at the time when a GP appointment is offered, she can't attend it. Denise said she has been on antidepressants for the past six years, something she directly attributed to the stress of being a full-time carer. She is often told by people to take a break, but that is something that is incredibly difficult for her because she would need to find someone Maureen is comfortable with, who is able to look after her and she is able to afford. Her own retirement is in doubt Since becoming a carer, Denise hasn't been able to pay into her pension. For work, she has been able to pick up some zero-hour flexible contracts for minimum wage. 'While you're going through this journey you talk to other people and you find that it's common across the board,' she said. 'You start to realise that if people weren't stepping in and doing what they were doing, the whole adult social care system would just collapse.' Denise was critical of the government's stance on adult social care. She said: 'I can remember for at least the last 10 years that it's going to be reviewed. There's been loads of these reports, and you just feel like saying to people, 'Come on, we need to address this'. 'We need to, not just as individuals but as a society, look at how we're going to handle this.' When asked what changes she would like to see the government make to adult social care and the role of carers, Denise said: 'I think they could really do a lot more in terms of allowing carers to have time off, especially with work. 'You're allowed to take two or three days' unpaid leave, but that's nothing. It doesn't even begin to cover the number of hospital appointments that you'll need to attend.' She also hoped that a system could be brought in that would allow for carers to be registered and recognised. 'It would allow us to be able to go to employers and people and say, 'I am a registered carer'.' Denise also wanted the government to recognise that often carers are skilled workers who could be put to use helping society if there was more of a push to get them to work from home. 'There's a whole skill base out there of people like me who have got the qualifications and have got the work experience,' she said. 'I think that's another frustrating thing. They go off and supposedly do these reviews, but they never ever seem to talk to us. We're not just sitting here complaining. We actually feel that we've got things we could suggest.' Protest outside Parliament In an attempt to drive the issue of carers into the public eye and onto the government agenda, Denise took part in a protest on Tuesday (July 22) outside Parliament. As she can't get away from her caring duties, Denise wasn't there in person. Her story, alongside those of several other unpaid carers, will be broadcast on LED screens outside government buildings in an attempt to get politicians to listen. The protest, which was set up by Uncommon Creative Studio and is backed by charity Carers Trust, has been launched in conjunction with a petition which calls on the government to give all unpaid carers the legal right to a break. Kirsty McHugh, CEO of Carers Trust, said: 'It's incredibly disappointing that the UK Government still hasn't given unpaid carers a right to respite. For decades, successive governments have depended on unpaid carers to provide social care on the cheap, which has delayed the need to come up with long-term funding and support. 'Whilst the government is focused on strengthening employment rights, it seems to have forgotten unpaid carers – who can't take a break at all.'
