Caring for your elderly parents while still looking after your own family can be a tough time for all concerned
NO MATTER how grown up you are, the realisation that the time has come to “parent your parents” can be very unsettling. The central standard by which you have lived your life is now stood on its head. That figure of strength for so long in your family is fragile and vulnerable.
The awareness may come suddenly, after a medical crisis, or gradually, as vitality and competence ebb away from somebody on whom you were once totally dependent.
Emma Murphy remembers well the day her father’s behaviour first suggested something was not quite right. It was the afternoon of her daughter Grace’s christening four years ago. Her father, Seamus Kearney, was a keen racing fan and he was due to join the christening party after attending Leopardstown races.
“I got a phone call that he was in a taxi heading home and that he couldn’t find the car, it had been stolen,” she recalls.
Her brother and brother-in-law went back to Leopardstown with him and they located the car sitting in a part of the racecourse where, he was adamant, he never parked.
“That was the first sign but we didn’t pay a lot of attention, we thought he had just got a bit disorientated,” she says.
Several other incidents soon followed. One day he was driving to Bellewstown races but he never arrived and returned to his Chapelizod home in west Dublin very late that night.
“My mother was worried sick but he got home eventually. I think he had gone to Skerries,” says Emma, the youngest of eight children raised on a family farm in Co Meath, which was sold when none of them wanted to go into farming.
The realisation “was sinking in” that her father, who had turned 80, was displaying symptoms of dementia. With his driver’s licence due for renewal, they knew his GP would not clear him to continue to drive.
“That was the first major thing, the car being taken off him in October three years ago,” says Emma. She and her siblings resigned themselves “to the fact that this was the way he was going and obviously tried to prepare my mum for it”.
The declining health of a loved one evokes a sense of loss not just for the spouse but for the adult children.
Anne (not her real name), who is helping care for her elderly parents, says “there is a grieving as you see the people who were so capable, lively and doing all the running, taking a back seat”. However, with practical problems of care, there is rarely time to dwell on the emotional fall-out.
There has been increased emphasis in recent years on supporting elderly people to remain at home as long as possible. Home care packages were introduced in 2006, but who gets what varies widely from one HSE area to another. At the same time, a private home care industry mushroomed as the idea of buying in services became more socially acceptable and, for some, more affordable.
Care for elderly parents is stressful, whether you are involved in hands-on caring or trying to organise others to do it. And, with women delaying motherhood, it often comes at a time when there are young children or teenagers to care for as well, not to mention a full-time job.
The pressure on this so-called “sandwich generation” can be immense. (Add in one or two young grandchildren, and they find themselves in the “club sandwich generation”.)
Anne’s mother, who has dementia, was hospitalised for three months after a fall. She and her three brothers then had to convince their father, also in his mid-80s, that although he had done a wonderful job up to now, he would need help once she was home.
Anne lives close by in south Dublin and is always in and out, but she has a part-time job and two of her three adult children still live at home. “You can be pulled between two households; it is difficult to be fair to everyone,” she comments.
Her father did eventually accept the need for a carer but it “was a big, big, change to their lives”, says Anne. “Now he can see the wisdom of it and is very pleased that Mam can be at home as that is where she has contentment.”
Before her mother left hospital, they were told she was entitled to two hours a day under the HSE home care package. They decided to supplement that with bought-in care from Private Home Care in Lucan, Co Dublin, amounting to two hours in the morning and one hour in the evening.
“It works really well and means my father can have a break,” says Anne, who continues to drop in every day.
“They have their own personal space when the carer is gone and that is really important.”
Once Emma’s father could no longer drive, it was very tough on her mother, Freda, as she hated driving with him in the passenger seat constantly telling her what to do. Within six months she and her siblings organised a private driver for the couple’s trips outside their neighbourhood and drew up a rota whereby every weekend one of them had their parents over.
“It means she can come to our houses, have a drink or two and relax and go home. It is respite for her,” says Emma (34) who lives in Newtownmountkennedy, Co Wicklow with her husband, Shane, and their three children, Laura (six), Grace (four) and Lily (18 months).
Self-employed in a printing business with Shane, she is a classic example of the “sandwich generation”. In recent times, what with work, her own children, and constant to-ing and fro-ing about her parents’ situation, Emma says she was “stressed to the gills” and sometimes felt like she just wanted to pack a bag and run away.
She would shout at the children and instantly feel guilty. She describes her husband as a “saint” who would always let her talk about it no matter how sick and tired he must have been of hearing it all.
“They always say it is the ones who are closest to you who take the brunt,” she points out.
Her and her siblings’ big concern was how best to support their mother who, at 78, “is very much in the real world”, says Emma.
Eighteen months ago they sought professional care for their father from a private provider, Home Instead Senior Care, which has 18 offices around the country and does 70 per cent of its business with private clients and the remainder in conjunction with the HSE. Initially Emma and her siblings were looking for a carer for four hours, two days a week, to give their mother a break.
“My mum has definitely got more dependent on us as a family and this is why we went down the road of professional care,” explains Emma. “This means she has respite and somebody to help her with the day-to-day responsibility of our father.”
After specifying what sort of person they were looking for, Emma sat in on interviews of potential carers for her father at the Fairview office of Home Instead Senior Care, which recruits, vets and trains carers.
“It had to be someone my mum would gel with and could feel comfortable leaving my father with,” she points out.
Since then and the beginning of this year they had two “lovely” carers. All was fine until about last September when their father’s condition was worsening.
“My mum wasn’t coping; she was very teary. As she said herself, she dreaded getting up in the morning as she didn’t know what she was going to face in the day.”
They broached the idea of having somebody live in as he could be up at night and their mother wasn’t getting enough sleep. She was running out of steam but was still resisting the idea of increased help from a carer.
“For us it was frustrating; she was putting up the barriers,” says Emma. “Nursing home was never going to be an option and at the end of the day that had to be Mum’s decision. It was mentioned and it was wiped off the slate as quick.”
She and her siblings tried to work with her to look at the options and make a decision.
“But it just wasn’t happening. So basically we put the gun to her head and said we’re making the decision, this is what’s happening. She wasn’t too happy, needless to say.”
Having explored the options with the local manager of Home Instead Senior Care, they decided to take a live-in carer from Tuesday mornings to Saturday mornings. The second interviewee was a Co Tipperary woman with whom they knew immediately their mother was going to feel very comfortable.
Since this carer started in the second week of February, “My mum is like a new woman. She is upbeat and in great form,” says Emma. “It has changed her life; she can come and go. She is delighted that we pushed her to this decision.”
They are satisfied that their father likes her too. “We always know he’s happy with a situation if he is not giving out!”
The worry has gone for Emma as well. Where once she had to almost psyche herself up to ring her mother morning and evening, now “the dread isn’t there every time I have to ring”.
She knows the carers are not “miracle workers” and there are going to be future issues but, she adds, “we will deal with those as they happen”.
SIBLINGS NEED TO WORK TOGTHER, NOT TO BLAME EACH OTHER
CARE FOR an elderly parent can cause tensions among siblings and bring long-buried childhood resentments bubbling back to the surface.
“Generally speaking, the responsibility for the care will rest on one person and very frequently that will be the daughter,” says Elizabeth Nicholson, managing director of Private Home Care in Lucan, Co Dublin, which was set up 20 years ago.
“We have noticed where there is a family of male siblings, it would sometimes be the daughter-in-law.”
She advises siblings to value each other’s contributions, whether it is hands-on care or paying a carer to come in, and that both are equally important.
“Some people are made for caring and are quite comfortable attending to personal needs. There are other people in the family who are not comfortable at all doing it,” she explains. “That should be respected.”
Relationships with siblings are forged in childhood and when we are under stress, we tend to revert to our default position, says relationship counsellor Keren Smedley. But siblings need to work together and not to blame each other.
“It has to be a ‘what can we do?’ approach, rather than ‘I think you’re appalling and you’ve always been like that’, which is what you want to say,” she suggests.
Smedley is managing director of Experience Matters in London, which offers workshops and advice for “sorting out your mid-life muddles”. She believes there is little support for the 50-plus generation who are not elderly like their parents, but are certainly not young either, and have specific issues to deal with.
She runs one workshop entitled Managing Parents and being the Sandwich Generation. It is very beneficial, she says, to meet people who are going through the same thing but are not family and might offer a different perspective.
“There aren’t places where you can go and discuss these issues because it does not sound okay to say ‘I wish I didn’t have to look after my parents . . . I would rather they were in a home or a box or whatever. It doesn’t sound like a nice thing to say. But people certainly think that.”
It is extremely hard the first time you have to suggest to a parent that it might be helpful if somebody came into their home because they are not managing, she points out. That is why it is easier if siblings can do it together.
Nicholson cautions that just because parents start appearing a little dishevelled or are not keeping the house as tidy as they once did, doesn’t mean it is time to call in a carer – particularly if they have their full faculties. “There may need to be an acceptance that your parent is getting older,” she adds, stressing that “being old is not a medical emergency”.