Remember ME - You Me and Dementia

August 31, 2008

U.K.: Who's going to take care of Mum?

. LONDON, England (The Guardian), August 30, 2008: LIFE & STYLE / Family By Kate Hilpern David Caspall with his 92-year-old mother, Nora, in Lewisham, London. Photograph: Frank Baron Anna Price and her brother recently found themselves quarrelling across the hospital bedside of their mother. Anna is 41, but the stresses and strains of caring for an elderly mother led them both back to the sibling rivalries of childhood. "It surprised us both," recalls Price. "Even my mother reverted to how she was when we were children, taking my brother's side - which was ironic, given that I was arguing that she should be able to choose her own type of care while my brother thought he knew better." There's nothing quite like the question "What shall we do with Mother?" to open up Pandora's box for adult siblings. Rosie Staal, author of a book by that very name, says, "When your elderly parent becomes dependent on you, it very often leads to rifts between siblings, even when there has been no conflict for decades." She explains: "It injects some very strong emotions such as tension and worry into the family dynamic, which are usually coupled with passionate views. One daughter might be strongly in favour, for instance, of homeopathic medicine and Father making his own decision about whether he should go into a home. Her sister might have more traditional views about medicine and insist that Father should go into a home immediately. Then another sibling might have an eye on inheritance and would be happy to do whatever is required to save money." Even if the type of care has been agreed on, siblings may find themselves squabbling over anything from visiting times to possessions to whether a childless sibling should do more than one who has teenagers. While researching her book, Staal found that, like Price, many adults are left astonished at the sibling fragmentation that can ensue. "We don't always see eye to eye about things and have always had very different views," says Price, "but it hasn't been like this before - not since we were children," adding that they've stepped straight back into the roles they had all those decades ago. Linda Blair, a clinical psychologist and author of Straight Talking, believes that reawakened sibling rivalry goes much deeper than simply wanting the best for the parent and feeling irked that the others are neglecting their responsibilities. "Brothers and sisters, even in late middle age, can find themselves - often subconsciously - competing for their parents' attention and preference," she says. "In fact, it can be brought to the fore when the parent is elderly. It's like it's their last chance." Contrary to what we might think, emotions don't know time, she says. "You might become more complex in the way you deal with emotions, but your core feelings tend to stay the same. A parent getting older can remind us of that quite forcefully." Julie Fuller, 43, says her sister had long given up vying for their father's favour by the time he became elderly, but that her unresolved anger about it was the cause of their sibling tensions. "After Mum died, my dad became very depressed and later attempted suicide, but my sister just took the attitude that he needed to pull himself together. She would snap at him, which would break my heart, although to an extent I could understand it because he was being hard work. But I think what was really happening was that she was angry with him and my mum because I was treated differently, as the youngest." Mary Cooper, 45, who has three siblings and an elderly mother, knows how she feels. "My sister has all this anger about the way she was treated as a child by Mum that she seems to feel able to take out on her, now that Dad has gone. That worries me because I think she'll feel guilty when Mum's gone. But when I try to point that out, she just thinks I'm taking Mum's side." Cooper has the added burden of being forced to see her mother in a whole new light. "I'm starting to think what was Mum really like? Is my perception of her correct? Was my childhood as good as I seem to remember? That's particularly difficult to deal with when I'm trying to care for her." While many elderly parents are devastated to learn of any sibling tensions that arise from their growing dependency, fearful of the break up of their family after they've gone, others - such as Cooper's mother - appear to play each of the siblings off against each other. "So far, the four of us have managed to avoid arguing, but it has caused a strain between us at times. The other day, one of them suggested she get a certain kind of car and did all the research, but Mum went behind her back to tell another sibling she wanted a different kind of car. I think my dad absorbed a lot of this kind of stuff and sort of managed Mum, but he's no longer here." Dorothy Rowe, a psychologist and author of My Dearest Enemy, My Dangerous Friend: Making and Breaking Sibling Bonds, says her mother attempted to play her off against her sister even though her mother and sister both lived in Australia. "My mother would write to me saying things like, 'Myra's trying to put me in a home. You must stop her.' My mother was trying to get me on side, but I didn't want to be on anybody's side. It took me right back." Rowe says that her relationship with Myra had always been strained, but by the time their mother died it was dire. "Myra even blamed me for my mother's death. When she learned I'd received a letter from Mum posted that day, she concluded that if she hadn't gone out into the summer heat to the post box, she wouldn't have collapsed." Rowe believes that the healthiest sibling relationships occur where there is recognition that each of you is dealing with the care and potential loss of a different individual. "Each of us sees our parents in a different light - often dramatically so - and that's essential to acknowledge and respect," she says. Judith Cameron, author of Caring for a Parent in Later Life, adds: "I've come across so many people who've had tremendous arguments with their siblings about what their mother would want. Why not find out what she actually wants while she can still think clearly? I also think it's important to decide on power of attorney early on." Mike Bingham, the director of elderlyparents.org.uk, believes much sibling rivalry could be prevented if sisters weren't expected to do everything. "Our research shows that in 72% of cases, it is a daughter who does the physical, practical, everyday caring, regardless of whether she has brothers," he says. "My mother came to live with us in 2001 when she became very dependent, and even though my brother lived just 25 miles away, he used to come and see her about three times a year," says Gillian Roberts, 61. "My relationship with him was never that strong, but it really started to deteriorate. I'd only call him if, say, our mother was unwell. For ages, he didn't even accept she was anything other than perfectly capable." Lizzie Heffer, 50, is more forgiving of her 53-year-old brother, but she still questions the way things have turned out. "He'll phone my parents, who are both in their 80s, and say, 'How are you?' and my mum will invariably say, 'We're fine, darling,' and he'll put the phone down satisfied that they're OK. When I call, I'll say, 'What does OK mean? How is Daddy really? Do you have plans today? What are you eating tonight?' I need to know that Mum has something to look forward to in the next couple of days and that she's getting enough rest." As their parents' needs have grown, it's Heffer - who lives two hours' drive away - who is doing the hands-on caring, rather than her brother who lives just six miles away. "It's not that my brother doesn't care. But he doesn't really accept that they're unwell and I've always been the 'carer' in the family." It should not be necessary to point out that some sons do the work too. David Caspall, 69, and his six siblings agreed on a rota to take care of their 92-year-old mother. "It petered out," he says. "I moved to live with my mother in London and only one of my brothers really helps me and he lives further away than most of the rest of them," says Caspall, who is supported by the Princess Royal Trust for Carers. Caspall believes it's significant that they weren't a close-knit family to start with. "But I think the real reason our relationship is getting worse is because they are embarrassed about how little they do, and I think there's jealousy about my relationship with Mum, too." Caspall is particularly resentful of grand gestures from other siblings, one of whom he says turns up laden with flowers and presents just twice a year. Keith Cockell, managing director of the retirement community Richmond Villages, sees many siblings in a state of denial: "The biggest areas of denial are depression and mental illness. A lot of people can't acknowledge it's happened to their parent, who they've always seen as in control. That can be frustrating for another sibling who does accept it and needs their support." Cockell says that in most families, there is a lead sibling who feels more morally obligated towards the parent. "The problem with this is that the others often wind up feeling guilty and jealous and that mix of emotions can in itself lead to difficulties." Then there's the ugly area of inheritance. "Some people think they might miss out and get suspicious of the sibling who's taking on the responsibility of caring. That is very common. I'm always surprised by how mercenary people can be about inheritance." Then there are possessions. Andrew West, 76, hasn't been in touch with his two sisters since 1993, following an incident when his mother gave one of her three Persian carpets to his wife. "My mother moved in with us and gave the carpet to my wife as a thank you for taking care of her. But my two sisters were so irked by not getting what they felt should be theirs that they stopped all contact with us. Even now, I don't even know if they're alive," he says. "But like so many of these things, it wasn't really about the carpet. It's about what it stood for. My sisters realised she was saying my wife was more of a daughter than they ever were." Conversely, Madeleine Starr, strategic projects manager at Carers UK, has seen cases where the whole family pulls together and actually becomes closer as a result. "My five siblings and I are currently caring for my dad, who has dementia, and my mum, who is very frail, and we're stronger than ever." Starr, 51, believes that their rota system, which they regularly review, is largely the reason. "Admittedly, the sibling who lives closest to our parents does most of the practical things, but we've worked it out as best we can in terms of time. One brother lives in Switzerland, but he's still part of the rota. One of the biggest resentments between siblings is about one living further away from another, but there's still a lot you can do from a distance." Looking after an elderly parent can be draining, and it can cause havoc in previously stable sibling relationships. But it's not entirely without its rewards. Laura Simms, 51, claims that doing the bulk of care for her mother is one of the best things that ever happened to her. "All through my life, my younger sister was the articulate, capable one, and so when our mother got Alzheimer's, I thought she'd be the one holding it all together. But it quickly became clear that the roles were reversing - that this was an area I excelled in. That affected my self-esteem, while my sister felt grateful I could take over. I think my sister saw our mother as Mum and couldn't cope with what was happening, whereas I was able to see Mum as a woman in her own right. It's taught us something about each other and we're closer for it." • Some names have been changed © Guardian News and Media Limited 2008