Many patients want to be cared for in their own home but that can be challenging for families
Phil’s wishes were always clear: she wanted to be cared for in her own home. Back in 2014, when she first started to show signs of dementia, her family decided to look after her for as long as they could.
“I was trying to work full-time and look after my own family, so a carer came in for about three or four hours a day to make sure she was eating and to keep her stimulated,” explains her niece, Jenny Hughes.
“Phil is widowed and has no children of her own but has always been so good to her nieces and nephews, so between us we dropped into her in the evening time.
“Then, in 2016, we got a phone call from a social worker to say that Phil had been found wandering and that she was giving away her money, so we knew we needed full-time support.”
Hughes extended her contract with an agency called Care at Home to provide full-time care, drawing on her aunt’s pension and paying some money herself. Through the HSE’s homecare package, she was given 21 hours of support – the maximum allowable amount.
Phil has limited mobility and her cognitive functions have declined further in recent years. The family are nearly out of money to pay for homecare, and their aunt has now gone into a nursing home. “We love her and want to look after her, but of course it can take its toll,” says Hughes.
Paula Maher is a registered nurse as well as the founder and owner of the Care at Home agency. She says looking after a loved one with dementia can be very challenging.
“Daycare centres and the Alzheimer’s Society provide vital resources, and many people employ homecare agencies so they can get out for a few hours and have a break.
“Family members should always take care of their own health first, because when their own needs are met, it’s easier to care for others.
“Ask for help and accept it when offered.
Try to exercise: it promotes better sleep, reduces stress and increases energy levels.”
Getting home help shouldn’t be foisted on an older person, Maher advises. “We’re often approached by people who tell us that their parent won’t entertain the idea of care, and ask if we will come talk to them. Forcing it doesn’t work; they have to consent to us coming in.”
Family members taking on care responsibilities need to know what they are doing: it can be dangerous, for instance, to try and lift an elderly person after a fall.
“If you can’t pick someone off the floor,
call an ambulance – they deal with thousands of such calls every year,” says Maher.
“Mobility is almost always an issue as people age and it does disimprove as dementia progresses. If modifications or adaptations are required in the home, a community occupational therapist will advise on these; grants are often available.”
Care agencies should always assess a client’s mobility and look at whether stair lifts, walking frames, safety bars or other aids are needed.
There are some other steps family members can take. “Dementia bracelets with a tracking device are useful if someone goes walkabout,” says Maher.
“Don’t leave rugs or boxes on the floor that people can trip over. And don’t make too many changes in the home: familiarity is important for people with dementia,” she adds.
The Alzheimer Society of Ireland provides support courses aimed at supporting family members caring for a loved one with dementia. Alzheimer.ie
Jenny Hughes (right) is the primary carer for her elderly aunt Phil Hughes (centre), who has stage four vascular dementia, and also looks after her mother who is in the earlier stages of the condition. Carer Karon Lammas (left) supplements the care giving.