20 things not to say or do to a person with dementia

Jane Floyd:

Often people are afraid of speaking to someone with Dementia because they don’t know how – they think he/she needs to be treated differently. That’s not the case. These 20 things not to say will help put your fears at ease.

Originally posted on Creating life with words: Inspiration, love and truth:

PowerPoint PresentationThis is a slightly revised and updated list of tips from the one I published here last week with 17 tips. The day after that I also wrote one called My dementia Trumpet call, explaining a little why I’d put together a list in the first place. Of course, there was some angst from a couple of people about some of my points, but overall, mostly consensus, especially by people living with dementia. If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia had disagreed with me.

I presented this new list to two groups yesterday, one a group of professionals at a Diversity Forum in Ararat yesterday morning, and then to a group of mainly family carers and people with dementia at a YOD support group last night, as well as…

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A Siblings’ Guide to Caring for Ageing Parents

Caring for an ageing parent alone is complicated. When your brothers and sisters are also involved, and when care, medical and financial decisions must be arrived at together as a team, caregiving can become even more complex. Your siblings can be enormously helpful and your best support. But in many families, they can also be a source of stress. No two families are ever alike.

In this column, I talk about how to identify the family dynamics that can impact shared caring, ways your siblings can help, how to increase your chances of getting that help, and how to deal with emotions that arise.

First signs: Visiting mum or dad at home reveals all is not OK

When adult children are able to take some time to visit their parents at home they often realise for the first time that their parents are far more frail than they expected. Although Mum or Dad always report they are “just fine” when you make those weekly phone calls, during a visit, you realise that this is not the case. Your parents suddenly seem much older, and you see the memory lapses, or shortness of breath, wavering balance, multiple prescription containers, or other signals of waning health.

Reactions can differ among your siblings. Perhaps your sister, who lives two hours away, is angry that her mother is not the source of emotional support she used to be and doesn’t want to accept what she sees; your brother, who lives across the country and only gets home once a year, is stunned by changes he didn’t expect.

You and your siblings talk in whispers about what should to be done to ensure their safety and care. You may consider the choices: a residential aged care facility (nursing home), retirement village, hiring a private carer to support them at home or one of the siblings taking on the responsibility for care.

Someone needs to step up, to see what can be done, to make decisions, to find some help, or even to live with your parents to keep them safe and healthy as possible. And it’s determined, often by default, that one person — perhaps the one who lives the closest, or doesn’t have kids, or is the oldest — will take on the role of primary caregiver.

Why sibling tensions can surface as parents need care

People are living longer — but not necessarily in good health. Their adult children may be caring for them for years or even a decade or more. Siblings or step-siblings are coping with a major emotional passage that stirs up childhood feelings and conflicts. But it’s made more challenging when there’s no model for working together as a team to handle the practical, emotional and financial issues that go with caring for someone who is no longer able to be independent. Some families are able to work out differences; many others struggle.

Consciously or unconsciously, needs arise for love, approval, or being seen as important or competent as a sibling. The disagreements now are over care for your parent: who does or doesn’t do it; how much; who’s in charge. At the same time, your parent is very aware — and most likely not happy — that he or she has become so dependent on you.

To help your family navigate through this situation, I offer this advice:

1. Think about, and talk about, family history and dynamics, and how they might affect caring for your parents. When we get together with our families, many of us tend to slip into our old roles. Maybe one person was the “responsible” one, one was the “social” one, one was the “helpless” one. But do those roles define you today? And more importantly, can you take a fresh look at who your siblings are now in the context of how these roles and assumptions can affect care for your parents?

  1. Consider that care for a parent is a shared responsibility. A key concern is who will be the primary care provider(s) and what support other family members can provide. Since this is a role that can progress to more than a full-time job, this is an important decision. Rather than letting assumptions become default decisions (e.g., Barbara is oldest so she will be in charge, or Max needs a place to stay, so he’ll take care of mum), really consider who is most able, willing, skilled, and emotionally prepared to fill this role. Then consider what other family members can contribute in time or money.

  2. To help reach the goal of effective shared decision-making, hold a family meeting. Family meetings are a way for siblings, parents and other concerned relatives or friends to try to clarify the situation, work out conflicts and set up a care plan that, ideally, all can agree upon. If the meeting is likely to be contentious, or if you want an experienced, objective voice to guide it, involve a facilitator such as a social worker, counselor, geriatric care manager or trusted outside party who will ensure that all participants have a chance to be heard. You may need more than one meeting. And although emotions might run high, it’s possible to conduct a productive meeting by following a few guidelines:

  • Set an agenda for the meeting and keep to it.
  • Focus on the here and now. Try not to bring up past or unrelated issues.
    Share your feelings with siblings instead of making accusations.
  • Listen and respect the opinions of all participants. Give everyone time to speak.
  • Share all information. If possible, get a professional assessment of your parent’s condition from a doctor, social worker or geriatric care manager and send the report to all participants before the meeting.

As time goes by, use email, online care-sharing tools, conference calling and/or in-person family meetings to help keep everyone abreast of care issues and information.

  1. Understand and respect that your brothers and sisters might have different ideas about the care your parent needs. It’s hard to accept that your parent now need your help. Unless there’s a sudden crisis like a stroke, adjusting to this new reality takes time. Some adult children have to work through their denial that anything serious is wrong. Others might feel reluctant to get involved, fearing they are “meddling” in their parent’s life.

Yet, to the primary caregiver, the person who is present day-to-day, it’s clear that his or her parent is less and less able to handle everyday needs. They see that mum or dad requires assistance with grocery shopping and cooking, that transportation and bill paying are problems, or advancing memory loss or fading eyesight or painful joints keep her from normal activities. Her needs are evident and most likely will become more intense.

Working through differences: communication plays a critical role.

If you’ve held family meetings, everyone concerned should have a clear idea of the medical status of your parent. Focus on the facts.

REALLY listen to what your siblings have to say. Be willing to compromise and to try new solutions, as long as no one’s safety is jeopardized.

For the doubters, it may be helpful for them to spend a weekend or even a day as a sole caregiver, to get a first-hand view of the issues.

Be straightforward about financial issues. Finances are a key component in long-term caregiving, affecting where your parent lives, whether paid outside help is available, whether placement in a facility is a suitable or desirable option, or whether home care is manageable with family support.

Overseeing bill-paying and dealing with health care bills is a job in itself, and can be delegated as such.

Let your siblings know that their help is needed and wanted (if, in fact, it is — see below). Be direct and specific about what tasks you need help with. Even if they live far away, siblings can help with finances, can provide virtual companionship to your parent with frequent phone calls and Skype, or can provide occasional respite or substitute care.

Keep communication lines open.

Tips for gaining the support of your siblings

Accept your siblings for who they are. Not everyone thinks, feels or acts the same way, especially when a situation is this emotionally charged. Try to keep your own expectations and expressions of “should” in check, and instead, strive to accept and work with your siblings’ personalities and abilities.

Be aware of how you ask for help. If you’re angry and frustrated when you’re talking with your siblings, it will come through in your voice. Their reaction will be defensiveness or anger. Likewise, making siblings feel guilty may lead to resentment and tension that will not be productive in solving the problems at hand.

Figure out what you really expect from your siblings. Do you think they should provide more hands-on care? Help with errands? Visits? A day or week of respite? Financial support? Help with decision-making? Analyze whether you’re able to give up control to allow a sibling to help you, or if you’re unconsciously communicating that you don’t trust the care that someone else provides.

Some family carers really don’t want help, or can’t rely on help from siblings who are undependable or unavailable. If you’re in this situation, admit it to yourself, accept that you’re on your own, and work to make the care as efficient as possible while still attending to your own health and well-being.

If other relatives or friends are willing, ask for help from them or from religious communities your parent might have been involved in. Check for resources in your community. When people offer to help, say yes.

If what you really want is recognition and appreciation from your siblings for all that you do, you can ask for that. (You also need to express your own gratitude when you do get some help.)

Seek advice from someone outside the family. A mediator, social worker or geriatric care manager may help get past long-standing emotional roadblocks, family competition, controlling behavior, denial, or other issues interfering with successful resolutions.

Conflicts over legal, financial and inheritance issues.

With Enduring Powers of Attorney or an Advance Health Care Directive, your parents can designate who will be in charge if they become incapacitated. Sometimes this creates tension among the adult children. If at all possible, this should be discussed at a family meeting and clarified for everyone concerned. An advance directive will outline the types of care that your parent desires at end of life. With this information in writing, a difficult situation is made a little more tolerable.

Some families compensate the primary family carer for their work, particularly if he or she has cut back on employment to care for their parent. How much the compensation is and who pays it can be covered in a Personal Care Agreement, which is a written contract. This can be reviewed periodically to ensure it reflects any changes in care.

If an inheritance is in question, or if someone feels they should get a larger portion of an inheritance because of their family carer duties or other reasons, this is another source of potential conflict. Be aware that your parents’ will is his or hers to direct as they like, and is not necessarily representative of who was the “good” son or daughter or who did more or less for their parents.

Sharing care among siblings is a reality that thousands of Australians manage on a daily basis. By taking steps to foster positive communication and support one another as much as possible, the challenging role of providing care for elderly parents can be a fulfilling, rewarding experience, which ultimately can bring siblings closer together.


Posted in 2014 Blog Posts | 2 Comments

Slowing the signs of ageing

‘Slowing the signs of ageing’ sounds like an advertisement for a face cream, but this is real science.

When it comes to aging well, having “good genes” (or rather, mutant ones) is key, says Cynthia Kenyon. She unlocked the genetic secret of longevity in roundworms — and now she’s working to do the same for humans

Genetic scientists are looking at what controls aging, and biochemist Cynthia Kenyon has found a simple genetic mutation that can double the lifespan of a simple worm, C. elegans. The lessons from that discovery, and others, are pointing to how we might one day significantly extend youthful human life.

Dr. Cynthia Kenyon is a geneticist and Senior Scientific Advisor at the California Life Company (Calico), Google’s anti-aging startup, and she is pioneering work in the molecular biology of aging.

Isn’t it amazing? We will soon be seeing some revolutionary advances in how we can slow the signs of ageing in our lifetime.


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Small Giants: bloggers influencing our health

2014 Bupa Health Influencer Blog Awards

Last Friday, Every Cloud Has A Silver Lining blog was awarded a Bupa Health Influencer Blog Award in the ‘Family Time’ category. The awards recognise those who are blogging to create awareness of health issues. This is what they said about the blog:

“Her blog serves as an important resource for people who care for ageing relatives, and offers insights and advice on the complexities and frustrations of aged care.
“This is a truly important blog which confronts questions around independence, control and choice”

I feel very honoured to be recognised alongside the ‘small giants’ of Australian bloggers – talented writers who are committed to sharing their stories, ideas, advice and insights in order to inspire and improve the health and well-being of others.”

Here’s a photo of the winners – with links to their awesome blogs below – check them out!

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Posted in November 2014 | Tagged , , , , | Leave a comment

Smiling on the inside: seeing beyond the wrinkles

elderlykidsThe saying “don’t judge a book by its cover” should be applied to the appearances of elder people.

The 8.00 am traditional service at my church has many elder people in the congregation who, if you didn’t know any better, look either sad or angry. But after I have a chat over a cup of tea afterwards with them, this perception is quickly dispelled. They are actually quite chirpy, despite appearances.

Which leads me to wonder whether people avoid speaking to elderly people because this reinforces a negative stereotype that elder people are grouchy and cantankerous.

Dimming eyesight in elderly people makes it difficult for them to see clearly from a distance. Poor hearing makes it difficult to engage in conversation, especially if there is background noise. Slow reflexes reduces their ability to respond spontaneously. All of this makes social connection more challenging, which is multiplied in elder-to-elder communication.

Ageing causes the face to sag. Wrinkles cause the mouth to drop and the forehead to crinkle – features that make faces appear sad or angry. Misreading emotions due to ageing facial features can give the false impression that a person is miserable or cranky, when in fact they are not. And it can unnecessarily put people off wanting to say hello and have a friendly chat.

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Posted in 2014 Blog Posts, November 2014 | 1 Comment

3 steps to protecting your ageing parent’s vital information

FAILTYIf you have an ageing parent experiencing frailty and memory loss, you’ll know how worrying it is that important information about their personal and financial affairs may become forgotten or lost.

New figures from the Australian Securities and Investments Commission show there is $1.14 billion waiting to be collected from 1.27 million unclaimed money records.

Some of the reasons for this is that people change their address, move into a retirement home, or move overseas.  Bank accounts have to be accessed every three years or they get impounded.

Another worrying trend is older people ‘hiding’ money in the home. Thousands and thousands of dollars.  I’ve heard of two stories recently of an elderly woman who buried $30,000 in cash in a tin in the ground under a lemon tree and an elderly man secreting cash in the cavity of a wall of his home.  All too sadly the latter suffered a stroke and was unable to speak or write.  The men demolishing the house years later were delighted with their “find”.

If your elderly parent is receiving care in the home, either by a family member or hired care worker, then it is even more important for you to be well aware of their assets and financial management. Frailty makes for vulnerability, and there are unscrupulous people out there. Continue reading

Posted in 2014 Blog Posts, November 2014, October 2014 | Tagged , , , , , , , , , | 3 Comments

Understanding ambiguous loss in families of people with dementia

couple in the shadowPatsy said she had her eye on Bill from the first day she started working at the glass factory in December 1958. He was the tall and muscular foreman on the factory floor, and the son of the factory’s owner. Patsy was one of the new typists in the typing pool. Despite many a flirtatious glance between them, it was months before Bill asked her out to the movies. Instead of icecream or popcorn, he had bought her a bunch of dark red grapes. But as they had not been washed, she let them rest on her lap while they watched Ben Hur. She was in awe of Charlton Heston, and fancied Bill looked a lot like him. They hit it off immediately, going to the dance hall every Saturday night and the movies on Friday nights. They married in the Spring of 1960.

Patsy and Bill have since had 54 happy years together. They have two children and four grandchildren and have always been inseparable. “Best friends” is how Patsy described their relationship. “As a family, we did everything together: sailing in the summer, skiiing in the winter.” When the factory was sold many years later, Bill began to import leather goods from Italy, and the family travelled to Italy together every year to source new supplies.

Patsy’s voice is flat and she speaks matter-of-factly. “The man I married is gone, but my husband is still here. He is withdrawn and sleeps a lot of the time, and doesn’t talk much. There are moments when I have him back, but they are brief and rare. I miss the way we were.”

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Posted in 2014 Blog Posts, Dementia, October 2014 | Tagged , , , , , , , | 2 Comments

Caring for ageing parents: a career limiting move?

The cost to your career to care for an ageing parent is often unexpected one.

Caring for an ageing parent can come at a cost to your career.

Women face a host of challenges throughout their career, but caring for ageing parents, for most, is an unexpected one.

The women’s liberation movement opened the door to a huge growth of mothers in the workforce over the last few decades. But its care for ageing parents that is going to be the next big thing for career women – driven by the slow tsunami of an ageing population.

The availability of formal child care and after school care have enabled mothers to overcome barriers to pursuing a career. But just when the years of raising children are almost over, and the upper rungs of the corporate ladder are within sight, an often unexpected caring responsibility arrives: caring for ageing parents.

Elder care is an issue we all will face. Not everyone choses to have children, but everyone has parents. The number of elderly people needing care is not small. Those aged over 85 years (420,300 in 2012) are going to double in the next 20 years.

People who have elder care responsibilities feel less supervisory support for their needs compared to workers with child care responsibilities, according to University of Rhode Island researchers presenting at a recent Work and Family Researchers Network Conference.

Their research also shows that workers caring for ageing parents also report higher levels of stress, overwork and work-life conflict than workers caring for children.

Caring for an ageing parent differs from raising children in that it is less predictable because a parent can suddenly need a lot of assistance over a longer period of time.

Modern medicine and medical innovations are helping people live into their 80s but inevitably, they will need support when their health starts to decline.

The ABS says that 1 in 3 workers are caring for ageing parents, and that figure is growing, with 45 per cent of workers anticipating taking on elder care responsibilities in the next five years.

Overwhelmingly, it is women who bear the cost of caring for their parents as they age.

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Malnutrition silently killing our elders

No one likes  to eat alone.

No one likes to eat alone. Go join him Ellen!

Malnutrition conjures up images of starving children in Africa. But it’s a common issue and closer to home here in Australia than you think.

Unbelievable as it may sound, according to the Australian Association of Gerontology one-third of  patients aged over 65 who are admitted hospital are ‘overtly malnourished’.  Clinicians say up to 44 percent of older people are at risk.

Hello? I thought we had an obesity ‘epidemic’? Obviously, not among our ageing population.

The increasing physical problems faced by the elderly make it not only difficult for them to cook and eat meals, but also more socially isolated and lonely. Who wants to eat alone?

Thank goodness for Meals on Wheels you say? Well, there’s no choice with what you get. And its not’s not free. The price of a meal ranges up to $12.00.  Faced with the increasing rise in heating costs, rents, day care/home care, older people are often faced with deciding between buying a meal and paying the bills.

Experts on nutrition for the elderly increasingly view the traditional solutions to the problems of hunger and malnutrition — social policy fixes like Meals on Wheels — as inadequate.

As the elderly age, they develop chronic illnesses that kill their appetites or make it difficult for them to cook or eat. In addition, the drugs they take can suppress hunger, and deterioration of their senses can make them lose interest in food. In other words, even if one brings elderly people food, they will not necessarily eat.

The consequences of malnutrition in older people are calamitous. It causes slow healing, recurrent infections, delayed recovery, frequent falls, fracturing, frailty and premature death.

“These people are dying from infections,” my doctor friend said. “That’s how people in Somalia are dying!”

The solution is simple: Don’t let the elderly eat alone.

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Posted in 2014 Blog Posts, August 2014, Money, Nutrician | Tagged , , , , | 2 Comments

Why I’m looking forward to old age

Sure, there are many down sides to getting older – not least because you’re  getting closer to The End. But it’s not all doom and gloom – there’s a lot to look forward to as well.

  • Feeling younger than I look

My mother says she sometimes has a double-take when looking into the mirror and sees an old woman looking back at her. She still feels young on the inside. I’m looking forward to a little bit of self-delusion about my age, lying about it to anyone who asks, and banishing all mirrors.

  • Dressing outrageously

I will wear whatever I want and will no longer be concerned for what others might think of me. I’ll wear my tracky dacks and ugg boots if I want to be invisible. Or I’ll wear bright lipstick, stunning hats, bold scarves and edgy sunglasses if I want to pretend I’m an ex-movie star.

  • Time

Every morning my dad sits for hours in a sunny spot on the verandah with his coffee and newspaper.  I’d love to stroll down to the park, sit on a bench and watch life – twittering birds, people walking and talking, dogs running, children laughing and playing. I’d curl up on the lounge read all those books I’ve bought over the years but never got around to reading. I’d take my time browsing through the grocery store and actually read the labels to see what’s in them.  I’d listen to music with a glass of wine in hand every evening. Anyway, you get the picture … I’d take it slow. Continue reading

Posted in 2014 Blog Posts, July 2014 | Tagged , , , , | 3 Comments