Sunday 24 June 2018

How to make a loved one's move into a retirement home easier

Upon leaving the house she raised her family in, Delia Hernon's initial decline worried her family. But as her grandson Caomhan Keane discovers, this is normal for the first few months of life in a retirement home. He finds out how we can make the transition easier

Caomhan Keane with his grandmother Delia Hernon in Áras Rónáin, Inis Mór Pic: Brian Farrell
Caomhan Keane with his grandmother Delia Hernon in Áras Rónáin, Inis Mór Pic: Brian Farrell

When Ireland's nursing home support scheme, known as the 'Fair Deal', was being designed it was anticipated that those taking advantage of it would only need it for up to two years, according to Martin Rogan, CEO of Mental Health Ireland. But, as the expected community support failed to emerge thanks to the recession, more people started taking advantage of the scheme earlier -and living longer.

Whether they're checked in for their own good, or of their own volition, the transition can be difficult for all involved.

"You're experiencing a loss," says Rogan. "Both the symbolic loss of a parent's independence and the loss of the hopes and dreams they may have had for themselves. There may have been something left they wanted to achieve or a person they wanted to be and now seems unlikely."

There are 22,000 people in residential care in Ireland, with the CSO predicting that the very old population will rise dramatically in years ahead. About 22pc of persons aged 85-plus require the continuous care of nursing homes, a group forecast to increase by 46pc by 2021.

My maternal grandmother, Delia Hernon (90) moved into Áras Rónáin nursing home on Inis Mór in March. While not easy on her children, they are more fortunate than most. It's the only care home on the Aran Islands, and both Delia and the family know the staff well. Residents she remembers, from more mobile times, surround her, and visitors for another resident will more than likely know her too. She has constant interaction.

But it's still been traumatic. Vascular dementia has robbed her of the memory that moving into the home was her own idea, leaving her convinced that if she kept walking up and down the halls she might be allowed to go home.

As the doctors tried to figure out appropriate medical care, she became sleep-deprived and agitated, alert to what was going on, but confused as to where she was.

Eventually she became sullen and silent, dozing off mid-conversation.

"The elderly embrace change with caution and difficulty and depend on routine and tradition," says Rogan. "So when they are spirited into residential care, you might see signs of retreat. A lot of them see it as terminal care as opposed to later-life care."

"You need to give it time," says Mary Burke, director of care at Killure Bridge nursing home, Co Waterford. "I've heard people say, 'I thought they would get better,' and try to take their parent back home after only a week. But once they get used to the place and it becomes familiar to them, they tend to settle in quite quickly.

"Remember they are leaving their family home, where they lived for 60 years. They're bound to be low in mood and a little sad. Families need to be alert to that fact."

Rogan says he would be more concerned if they didn't show signs of anxiety or stress in those first few weeks. "Depression gives us time to reflect and recalibrate our behaviour and our lifestyle and when first moving into this new home an old person may have a reactive depression."

People shrink inwards. Their conversation becomes more monotone, their energy level and level of movement fall a bit flat. Psychologically the content of conversation will become limited and tend towards negativity. Their appetite may disappear, they might lose weight and suffer sleep disturbance.

If it lasts longer than three to five weeks, it's no longer reactive, but clinical. "Their mood gets darker, they retreat to bed; personal hygiene and self-care start to slip."

It's important that family do their utmost to make residents feel included in life outside the home. Take them out for visits, where possible. Involve them in the planning of weddings and birthdays. Keep up activities they may have done prior to moving into the home, such as visiting a grave on a Monday or bingo on Wednesday.

"Try and introduce as much of their previous life into this new context," says Burke. "If they have their own curtains, their own furniture or bed linen that they are attached to, bring that with them so they don't feel like they are trespassing into a room that doesn't belong to them."

Most of all, don't make them a set date in your schedule. "Old people can decode a rota very quickly," says Rogan. "They can start to expect it, or can feel like you are only visiting because you have to and they might not get as much enjoyment out of it as they would if you drop in unannounced.

"Encourage friends to visit too," says Burke. "We get a lot of families, but friends tend to tail off because no one thinks to bring them."

Burke says it's important to let staff know your parents' routine. "We get their medical history from the GP. What we need from families is what their life and personality was like before they moved into the home. The little idiosyncrasies and family dynamics that a person with dementia might not be able to tell us.

"Is there a child's anniversary that needs to be remembered? A relative in America who never comes home? A sister they can't stand?

"Do they prefer being called by their first name, or Mr or Mrs? Were they a nurse or involved in local politics when they were younger? Even things like when they like to eat and how often do they go to the toilet? If we see someone going to the toilet 10 times a day we think they have an infection but that might be the way they always were at home."

While it might not be politically correct, things like gender preferences should also be flagged. "They might have issues with members of the opposite sex. The last thing we want to do is cause any additional distress during this time."

My family were fortunate. My grandmother can almost see her house from the nursing home. We never had to consider any options as to where she would live. Other families are not as lucky. How should they approach looking for a home for their parent?

"You need to look at the context of their life and what they can continue doing," says Geraldine Jolly, who has been a nursing home inspector since 2009.

"If they are from a farming background or had an active outdoor life, they might want ready access to a garden. They might like to still go to their bridge club, or for lunch with their friends so the home needs to be near a bus route.

"Will the people have their own room? Do they have the choice of a daily routine? If they don't like eating with other people can they have their meals in their room? Do they have good internet connection as they have family abroad who they like to Skype?

"These are all things we wouldn't have thought of years ago," says Jolly. "You need to think of the future as well. Just because your relative is in perfect health at the moment, doesn't mean that will always be the case. Does the home have good access to dieticians, physios, speech therapists? Is there an extra charge for that?"

Depression can deepen if a person with a lot of capability is discouraged from looking after themselves. "They become risk-adverse," says Rogan. "Staff may say 'You are not to get out of bed until I am ready to bring you to the bathroom, etc'. If someone was to say that to you, you would be offended, but an old person might not have the confidence to say, 'I appreciate your concern but I can do that for myself'."

Most homes will have several inspection reports, which can be read online. If there were issues relating to staffing levels, access to health professionals, or the building itself, write out a list of specific questions and be sure to ask them when you visit.

"Be conscious of your first impressions," says Jolly. "When you drive up to it, do the gardens look looked after? Is the home clean, tidy, does it smell nice? Are the staff spontaneous and cheerful?"

"It is unusual that any person would discuss the issue of a nursing home with their children beyond exclaiming 'don't put me into one of those places'," says Gerard Scully, senior information officer of Age Action.

"It is, however, a good idea to sit down and discuss your care preference in the event that an emergency means your children are faced with having to make decisions on your behalf, with no sense of what your wishes might be.

"One may never need it, and 80pc don't, but if preferences are known and contingency arrangements are in place, they won't become the burden they inevitably will if they don't face the possibility that they might one day lose their capacity."

Burke suggests we take a pro-choice approach when engaging with a parent who may be resistant to going into a home.

"People sometimes expect the myths to be true. That the residents are all in a circle asleep or that the place smells. We have moved on hugely since 2009. You can get up when you want. You can eat when you want. Each person is treated individually. Their wishes are respected."

My own grandmother has come on leaps and bounds since starting her life in Áras Rónáin. On a recent visit she was back to giving out about my mother's hair and threatening to dye her own blue. Her mind was as sharp as her tongue as she asked for gossip. And all talk of going home has stopped… beyond a dig about how we'd abandoned her, delivered with a wink and a smile. She even serenaded me over gin.

"If you're going parachuting, the scary bit is not you jumping out the door; it's the bit beforehand, when you can still avoid it," concludes Rogan.

"Anyone facing into a big decision is bound to see his or her anxiety spike. And there's a certain level of relief once that gets resolved."

The average length of time an old person lives in a nursing home is two years. Some last four. My father's mother lasted six. So whether they're checked in for their own good, or of their own volition, the transition can be difficult for all involved. The parent, the child and the care staff.

"You're experiencing a loss," says Martin Rogan, CEO of Mental Health Ireland. "Both the symbolic loss of a parent's independence and the loss of the hopes and dreams they may have had for themselves. There may have been something left they wanted to achieve or a person they wanted to be and that now seems unlikely."

There are 22,000 people in residential care in Ireland, with the CSO predicting that the very old population will rise 'dramatically' in years ahead. Approximately 22% of persons aged 85+ require the continuous care of nursing homes, a group forecast to increase by 46% by 2021.

My maternal grandmother, Delia, 90, moved into Aran Ronan Nursing Home on Inis Mor this past March. While not easy on her children, they are more fortunate than most. The only care home on the Aran Islands, both she, and we, know the staff well. Residents she remembers, from more mobile times, surround her, and visitors for one patient will more than likely know her too. She has constant interaction.

But it's still been traumatic. Vascular dementia has robbed her of the memory that moving into the home was her own idea, leaving her convinced that if she kept walking up and down the halls she might be allowed to go home.

As the doctors tried to figure out appropriate medical care, she became sleep deprived and agitated, alert to what was going on, but confused as to where she was.

Eventually she became sullen and silent, dozing off mid conversation.

"The elderly embrace change with caution and difficulty and depend on routine and tradition," says Rogan. "So when they are spirited into residential care, you might see signs of retreat. A lot of them see it as terminal care as opposed to later-life care."

"You need to give it time," says Mary Burke, Director of Care at Killure Bridge, Co Waterford. "I've heard people say, 'I thought they would get better," and try to take their parent back home after only a week. But once they get used to the place and it becomes familiar to them, they tend to settle in quite quickly.

Remember they are leaving their family home, where they lived for 60 years. They're bound to be low in mood and a little sad. Families need to be alert to that fact. Rogan says he would be more concerned if they didn't show signs of anxiety or stress in those first few weeks. "Depression gives us time to reflect and recalibrate our behavior and our lifestyle and when first moving into this new home an old person may have a reactive depression."

People shrink inwards. Their conversation becomes more monotone, their energy level and level of movement fall a bit flat. Psychologically the content of conversation will become limited and tend towards negativity. Their appetite may disappear, they might loose weight and suffer sleep disturbances.

If it lasts longer than 3-5 weeks, its no longer reactive, but clinical. "Their mood gets darker, they retreat to bed; personal hygiene and self-care starts to slip."

It's important that family do their utmost to make residents feel included in life outside the home. Take them out for visits, where possible. Involve them in the planning of weddings and birthdays. Keep up activities they may have done prior to moving into the home, such as visiting a grave on a Monday or bingo on Wednesday or whatever.

"Try and introduce as much of their previous life into this new context," "says Burke. "If they have their own curtains, their own furniture or bed-linen that they are attached too, bring that with them so they don't feel like they are trespassing into a room that doesn't belong to them."

Most of all, don't make them a set date in your schedule. "Old people can decode a rota very quickly," says Rogan. "They can start to expect it, or can feel like you are only visiting because you have to and they might not get as much enjoyment out of it as they would if you drop in unannounced.

"Encourage friends to visit too, " says Burke. "We get a lot of families, but friends tend to tail of because no one thinks to bring them."

Burke says it's important to let them know your parents routine. "We get their medical history from the GP. What we need from families is what their life and personality was like before they moved into the home. The little idiosyncrasies and family dynamics that a person with dementia might not be able to tell us.

"Is there a child's anniversary that needs to be remembered? A relative in America who never comes home? A sister they can't stand?

"Do they prefer being called by their first name, or Mr or Mrs.? Were they a nurse or involved in local politics when they were younger?

"Even things like when they like to eat and how often do they go to the toilet? If we see someone going tot he toilet ten ties a day we think they have an infection but that might be the way they always were at home."

While it might not be politically correct, racial and gender preferences should also be flagged. "They might have issues with non national staff, or with members of the opposite sex. The last thing we want to do is cause any additional distress during this time."

My family were fortunate. My grandmother can almost see her house from the home. We never had to consider any options as to where she would live. Other families are not as lucky. How should they approach looking for a home for their parent?

"You need to look at the context of their life and what they can continue doing," says Geraldine Jolly, who has been a nursing home inspector since 2009. "If they are from a farming background or had an active outdoor life, they might want ready access to a garden. They might like to still go to their bridge club, or for lunch with their friends so they home needs to be near a bus route."

Will the people have their own room? Do they have the choice of a daily routine? If they don't like eating with other people can they have their meals in their room? Do they have strong Internet connection as they have family abroad that they like to Skype?

"These are all things we wouldn't have thought of years ago," says Jolly, "so you need to think of the future as well. Just because your relative is in perfect health at the moment, doesn't mean that will always be the case. Does the home have good access to dieticians, physios, speech therapists? Is there an extra charge for that?"

Depression can be exasperated by the care home staff, which might discourage a person with a lot of capability from looking after themselves. "They become risk adverse," says Rogan. " They'll say' You are not to get out of bed until I am ready to bring you to the bathroom, etc'. If someone was to say that to you, you would be offended, but an old person might not have the confidence to say 'I appreciate your concern but I can do that for myself'."

Most homes will have several inspection reports, which can be read online. If there were issues relating to staffing levels, access to health professionals, or the building itself write out a list of specific questions and be sure to ask them when you visit.

"Be conscious of your first impressions," says Jolly. "When you drive up to it, do the gardens look looked after? Is the home clean, tidy, does it smell nice? Are the staff spontaneous and cheerful?"

"It is unusual that any person would discusses the issue of a nursing home with their children beyond exclaiming 'don't put me into one of those places'," says Gerard Scully, Senior Information Officer of Age Action. "It is, however, a good idea to sit down and discuss your care preference in the event an emergency means your children are faced with having to make decisions on your behalf, with no sense of what your wishes might be."


"One may never need it, and 80% don't, but if preferences are known and contingency arrangements are in place, they won't become the burden they inevitably will if they don't face the possibility that they might one day lose their capacity."

There is a fundamental shift away from the principle of best interest (doing what is consider what is best for person) to a principle of will and preference (the individual being allowed to make unwise decisions so long as the older person retains any capacity to understand and make a decision).

Burke suggests we take a pro-choice approach when engaging with a parent who may be resistant to going into a home. "People sometimes expect the myths that are out there to be true. That the residents are all in a circle asleep or that the place smells. We have moved on hugely since 2009. You can get up when you want. you can eat when you want. Each person is treated individually. Their wishes are respected.."

My own grandmother has come on leaps and bounds since starting her life in Aran Ronain. On a recent visit she was back to giving out about my mothers hair, threatening to die her own blue when the nurse said it looked like her own. Her mind was as sharp as her tongue as she probed us for gossip. And all talk of going home has stopped…beyond a well-delivered dig about how we'd abandoned her, delivered with a wink and a smile. She even serenaded me over Gin.

"If you're going parachuting, the scary bit is not you jumping out the door; it's the bit before hand, when you can still avoid it," concludes Martin. "Anyone facing into a big decision is bound to see his or her anxiety spike. And there's a certain level of relief once that gets resolved."

BOX OUT: FAMILIES

It's important to remember that it's not just the parent who is going through a traumatic time. Children struggle with the change, particularly if they were the primary care giver. "You have to support each other and try to make the best of it," says Martin Rogan. "Often, the primary caregiver will have parked family life or there career to care for a parent. They didn't allow themselves to become ill. So it's not uncommon, for their own health concerns to come to the fore at this time."

"They are also likely to feel a sense of loss, a sense of bereavement. A feeling that a special relationship is no longer available, which can manifest as depression or anxiety."

While this person might come across as doggedly single-minded, don't feel like you can't advocate on behalf of the resident. My mother and aunts got so wrapped up with throwing my grandmother a 90th birthday party, they couldn't see that it was overwhelming the woman, who only wanted a cigarette. A grandchild intervention was quickly convened.

And though it can be tough, don't treat the visits like a chore. "If its not satisfying for both parties, you'll think of a million excuses not to do it," says Martin. "Find a way to connect with the relationship you used to have. Make an effort in your own appearance. Put on make-up or aftershave. Don't be looking at your watch, running out after handing over your fags and the paper. Imagine what it would be like to be on the retrieving end of that visit."

Advice for families

  • It's important to remember that it's not just the parent who is going through a traumatic time. Children struggle with the change, particularly if they were the primary care-giver.
  • "You have to support each other and try to make the best of it," says Martin Rogan.
  • "Often, the primary care-giver will have parked family life or their career to care for a parent. They didn't allow themselves to become ill. So it's not uncommon, for their own health concerns to come to the fore at this time.
  • "The primary care-giver is also likely to feel a sense of loss, a sense of bereavement. A feeling that a special relationship is no longer available, which can manifest as depression or anxiety." And though it can be tough, don't treat the visits like a chore.
  • "If it's not satisfying for both parties, you'll think of a million excuses not to do it," says Martin. "Find a way to connect with the relationship you used to have. Make an effort -put on make-up or aftershave. "Don't be looking at your watch, running out after handing over the paper. Imagine what it would be like to be on the receiving end of that visit."

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