What shall we do with mother?
When a parent’s life changes and they need to be cared for, there are many difficult decisions that need to be made. SUZANNE GREEN investigates ?some of the issues that arise and says it’s time we raised our expectations of care homes
According to a recent report by the Alzheimer’s Society (Low Expectations, 26 February 2013) only 41% of relatives surveyed reported that their elderly loved ones enjoyed a good quality of life in a care home. Yet, despite this finding, three-quarters (74%) would recommend their family member’s care home. This seems to indicate that, though many people are not entirely happy with the care their relative receives, they don’t expect it could be much better and they are grateful it’s not worse!
I grew up in the US, where I was taught to politely, but firmly, speak up if goods or services were inadequate. So I hope that this part of my daughters’ heritage, plus the down-to-earth directness of their Lancashire-born father, will ensure that they will expect high standards and good, professional care if they have to choose a home for us.
According to the Alzheimer’s Society’s chief executive, Jeremy Hughes, “Society has such low expectations of care homes that people are settling for average.” Of course, there are reasons for the pessimism. We routinely read of neglect or abuse in homes and about underfunding. With a rapidly ageing population in the UK – it is thought that by 2030 the number of over-65s will have increased by 50%, while the number of over-85s will have doubled – the care system is finding it hard to cope.
Given these realities, feeling daunted or discouraged is understandable. But if you have come to the point where you need to think about care for one or both of your parents, there is a lot you can do to ensure you find what you are looking for. Settling for a situation you’re not happy with should not even be an option.
Start your decision making with prayer. Ask for God’s guidance as you set out on what can seem an overwhelming and emotion-charged venture; and, if your parent is a Christian, pray with them as you work through the various options.
Could you care for your parents yourself?
Many people give at least some consideration to looking after their parent(s) in their own home. Some add a granny flat, so that parents can be near, but still fairly independent. There are many advantages to this situation, if the person is able enough and it’s financially viable. Obviously, it means you can be there to help your parent when necessary, without removing their independence, or completely changing your lifestyle to accommodate them. Another benefit is that they will have more time with their grandchildren.
Karleen Shafer (60), a landscape architect in Michigan, USA, and her husband Rus looked after his parents in their home for about two years. “It was a very draining and exhausting time,” says Karleen, “but also very rewarding. I’m glad we did it – I learned so much. But, that’s how God planned it, right? Those of us who are doing the giving are actually the ones getting the gift. I see this clearly now, though I didn’t at the time.”
But sometimes asking an elderly parent to move in doesn’t work, especially when the invitation has been made because of a mixture of love and guilt, without much forethought. In such cases, the elderly parent may leave feeling upset or destroyed, and their daughter ends up feeling more guilty than if she had never tried to care for them. So it’s important to consider this option and its implications carefully beforehand. The reality is that, though most of us would like to be able to look after our parents, relatively few of us can actually manage it.
What other options are available?
Is some sort of sheltered housing an option for your parent? This means they could continue to live semi-independently for as long as possible. Sometimes sheltered housing is linked with a care home, allowing a smooth transition to residential care when it’s needed.
Does your parent need a home care package? Depending on need, this could mean someone would come in every morning to wash, dress and feed them. They’d return later to make lunch, and finally bring in dinner and “tuck them in” for the night.
Residential care assumes your parent is ambulant, and able to wash, dress and feed themselves. But if there are medical needs, nursing care may be required. There are around 20,000 care homes in the UK, offering different facilities, activities and types of care. In England the Care Quality Commission is the independent regulator of all health and social care services, and there are equivalent bodies in other parts of the UK (see Useful Info). They publish reports on regular inspections of the homes registered with them.
You need to consider what you will do if you choose residential care, and later your parent needs nursing care. Most elderly people do not want to be moved often, or even once. Will the home do palliative care? Is there a separate unit for dementia patients? Ask lots of questions of the managers of any care homes you consider. It’s also a good idea to talk to people who already have someone in the home you are thinking about. Chat with them in the car park and ask for their opinions. Some homes offer a trial period, so that you can ensure your parent is happy before committing.
If your parent suffers from dementia, you will have additional considerations. The Alzheimer’s Society has produced a downloadable booklet, Handy Guide to Selecting a Care Home, to help you.
How will I pay for my parent’s care?
Funding is no small consideration. But, again, being organised and doing your research will help. Advance planning will help you to meet the challenge when it comes. And, of course, it’s important to pray about it. Ask God to guide you, to help you provide the best care possible, and to lead you to those who can wisely advise you.
Most people will have to pay something towards their accommodation and personal care from their income and capital. This will involve means-testing if the local authority is involved. Once the means test has been done, and your parent’s needs have been assessed, their income and assets are taken into account. Currently, those with assets of more than £23,250 are expected to pay the full cost for their care. But when new rules come into force in April 2017, this amount will be increased to £123,000. In addition, at this point care costs will be capped at £75,000, though the cap only applies to personal care and does not extend to food and lodging.
It is worth pointing out that it’s only the capital of the person going into care that is assessed, not their partner’s. What’s more, if only one of your parents is going into care, while the other remains in the family home, the house cannot be included in the means test or sold to pay for care.
Depending on the results of the means test, an elderly person can also expect a personal allowance. Even those who are self-funding can apply to the social work department and receive a personal allowance.
Care home costs differ according to where you live in the UK. So it’s a good idea to get in touch with the specific body in charge of regulating social care in your area. You can get advice about funding from Age UK and your local Citizen’s Advice Bureau. Remember that there may be people in your church who can advise about funding, and share valuable insights and experience of specific homes.
It’s time all of us raised our expectations of care homes. And we need to be vocal about what we expect. Maybe as we do, we will increasingly get the kind of excellent care we want for our parents.
“I made the best decision I could, but I still feel guilty”
Jenny Anderson (67) has been through the process of choosing a care home twice: once for her own mother and?once for her mother-in-law.
It was much easier to make the decision for my own mum,” says Jenny, “because in a sense it was out of my hands. She lived in London, where she was admitted to hospital when she became seriously ill. Her kidneys were failing and I was told she would never be able to go home. It was obvious we had to find a home in Edinburgh where she could get good nursing care.
“So we hired a private ambulance to take her from the hospital to King’s Cross station, and men carried her onto the train on a special chair. She arrived in Edinburgh on my twin daughters’ 21st birthday. The whole family met her at the station.”
Jenny looked into a number of homes before making a decision. She asked questions, read inspection reports and made visits. “You have to pray before making the decision, and then see if you have a sense of peace about it,” she comments.
Jenny believes that very few women can do what she has had to do without some degree of guilt. “We all want the best for our parents,” she says. “But we are at a stage in life when we have to try to split our time between our husband, parents, kids and grandchildren – as well as holding down a job. In many ways, I think this is the most difficult age for a woman, as we are torn in so many different directions.”
It’s admirable that even though Jenny did not have a good relationship with her mother for most of her life, she adamantly refused to settle for anything but good care for her. Once her mum was in the home, Jenny made sure to visit her three times a week, and spoke up if something was not as it should be. “You have to be proactive,” she says. “Good managers will take note of your concerns and act.”
For both her mum and her mum-in-law, Jenny selected GPs, dentists and opticians to go in, rather than using those provided by the home. As well as helping to ensure a better experience for your parent, regular visiting and interaction with the home may help to lessen any feelings of guilt you may be carrying. And after your parents are gone, you will have the comfort of knowing that you spent time with them and did your very best to make sure they were well looked after. For Jenny, the miracle was that she and her mum became very close during the 10 years that she was in care.
Nevertheless, Jenny admits that she did feel guilt – perhaps it’s inevitable. “I felt more guilty about my mum-in-law,” she says, “because physically she was well enough to come and live with us. But I knew that I couldn’t cope with that. And my husband agreed.”
After being on a waiting list for a couple of years (most good homes have one), Jenny’s mum-in-law went into a residential care home at age 92. She died four years later, and the home nursed her at the end, even though they were not technically required to do so.
“I’ve learned that you have to find out what expectations your parent has, keep this in mind when choosing a home, and try to manage their expectations,” Jenny comments. “If possible, let them get involved in the selection process. All my mum-in-law wanted was people to talk to, and yet there were very few people at the home who could converse with her.”
If you have a parent or relative suffering with dementia, this little book in Lion Hudson’s First Steps series may prove useful. First Steps to Living with Dementia, by Dr Simon Atkins (Lion Hudson ISBN 978 0 7459 5556 8) advises about how dementia is diagnosed, conventional treatments and alternative remedies, the social and financial support available, and the lifestyle changes that help to prevent it.
We have five copies to give away. For your chance to win, send your name and address to Woman Alive.
People who can help:
Care Quality Commission (England) checks all hospitals in England to ensure they are meeting national standards and also inspects care homes.
CQC National Customer Service Centre, ?Citygate, ?Gallowgate, ?Newcastle upon Tyne?, NE1 4PA
Tel: 03000 616161?
Care Inspectorate (Scotland) – ?the independent regulator of social care and social work services across Scotland.
Contact local offices? – Tel 0845 600 9527
Care and Social Services Inspectorate Wales encourages the improvement of social care, early years and social services in Wales.
Contact local offices?.
The Regulation and Quality Improvement Authority (N Ireland) ?is Northern Ireland’s independent health and social care regulator. ?The Regulation and Quality Improvement Authority?, 9th Floor Riverside Tower, ?5 Lanyon Place, ?BELFAST? BT1 3BT
Tel: 028 9051 7500?
Age UK, ?Tavis House, 1-6 Tavistock Square, ?London WC1H 9NA.
Tel: 0800 169 6565?
Alzheimer’s Society, ?Devon House, ?58 St Katharine’s Way, ?London E1W 1LB
Helpline: 0300 222 11 22?
Citizen’s Advice Bureau
Contact local offices