It was a Mother’s Day full of guilt for Deirdre Fallon Sheehan last March. She had made a lovely cream cake for her 77-year-old mam but she was also packing a suitcase to bring her to a nursing home the next morning.
Gertrude Fallon, who has dementia, was going in for only a week’s respite care but it was the first time. The family were in two minds about availing of the opportunity, but had been advised they were lucky to get it and they would need it in the future.
“I felt so bad. It was like putting my child into an orphanage,” says Deirdre. Gertrude “wasn’t happy and she wouldn’t eat”.
Visiting her, “you start seeing things and start trying to fix them”, says Deirdre. In the end she, her only sibling, Colette, and their father, JJ, “basically ended up in there for the week with her”.
However, after what had been a frenetic few months, it proved to be a turning point for Deirdre, who is an example of the so-called “sandwich generation”, pulled in both directions as she mothers not only her children, Murray (seven) and Devin (six), but also an elderly parent.
She had a serious talk with herself about unwarranted guilt, how the family were doing a good job but that this was for the long term. She realised she could be dealing with the grief of gradually losing her mother for another 10 years and that it must not affect her relationship with her own sons.
‘Absolute ignorance’
When Deirdre first heard, not long after Murray was born, that her mother was in the early stages of dementia, she received the news “with absolute ignorance”. She thought it meant a person would forget a bit and couldn’t be relied on to pass on a vital message.
“That’s the easy part; they don’t tell you about the personality changes. You’re basically living with somebody who you’ve known all your life and you don’t know them at all.”
It’s hard to pinpoint when they first noticed changes. “It’s like a light bulb very, very slowly being turned down.”
Deirdre had lived in Dublin for 20 years but five years ago, she and her husband, Ciarán, decided to move back to her native Co Longford to raise their own family.
Before that, they used to go down to visit her parents at weekends.
Describing Gertrude as a real “country mother”, whose life revolved around her home, Deirdre says the key was always in the door “and if you ran in and Mammy wasn’t there, she had been kidnapped”.
In more recent years they noticed her pulling back on the cooking and so they told her they would pick up takeaways before landing in on her, rather than expecting her to prepare dinner.
After Deirdre and her family moved into their new home in Ardagh, about 20km from her parents’ house, her mother seemed a bit confused when visiting, but she put that down to the unfamiliar surroundings. Overall, Gertrude seemed fine and was still chatty on the phone, although she might repeat herself a little.
Peculiar habits
Then, about two years ago, they noticed her developing some peculiar habits, such as taking out the cardboard from the inside of the kitchen towel and toilet rolls, as to her mind it was rubbish. It was around then that Deirdre and Colette decided to take over the cooking of daily dinners for their parents, splitting the week between them.
Gertrude gradually became less forthcoming on the phone and, towards the end of last year, would sometimes just hang up mid-conversation.
“I noticed in the couple of months coming up to Christmas that her walk wasn’t great and she would step over things – as if there were mounds, that weren’t there.”
But on December 7th, her father went out briefly to the shops and on his return found Gertrude on the ground.
“It was very evident that her hip was broken. But she was as cool as a breeze – I would have seen her more tizzied over burning toast in years gone by,” Deirdre says.
That was a Saturday. She was taken to Tullamore hospital, got a hip replacement on Monday and was up walking on Tuesday. Ten days later she was home but that evening, Deirdre realised Gertrude “had a pad – a nappy – on her and she had forgotten what to do”.
When they made inquiries to the hospital, staff were apologetic but explained, she says, it was policy to use a pad on patients with dementia as they didn’t have time to deal with accidents. So, not long after toilet-training her own toddlers, Deirdre was faced with trying to retrain her own mother.
It is not hospital/nursing policy in Tullamore that patients admitted with dementia are given incontinence pads, an HSE spokeswoman tells The Irish Times. But sometimes these pads are used, "particularly post-operatively, as most patients undergoing surgery for a hip fracture have a spinal anaesthetic which removes sensation from the lower half of their body and they may either be incontinent or have difficulty passing urine".
Christmas Day was hectic – enjoying Santa presents at home with the boys before loading dinner into the car to take over to her parents.
The public health nurses were great, Deirdre says, in organising carers over most of the Christmas period to help get Gertrude in and out of bed.
She seemed to be doing fine until JJ rang on the evening of January 16th to say Gertrude would not stand to enable the carers to put her to bed and they had to lift her. As her surgical wound was a little red and her legs swollen, it was thought bed rest would solve the problem.
But Gertrude has not put a foot to the ground since. While the initial shock of the fall did not appear to have worsened her dementia, by February they were told her Alzheimer’s had escalated from stage three to stage six, and that she would never walk again.
“That was a very dark time,” says Deirdre. “Everybody can take subtle changes . . . but when all of a sudden your mother becomes totally reliant on you and is being hoisted from a bed to a wheelchair . . . she still looks like my mother but I am parenting her now.”
All their lives have changed. While JJ is Gertrude’s main carer, a support system had to be put in place. Two carers now come in every weekday morning, 9.30am-10.30am, to get her out of bed, washed and dressed, before settling her into a chair or wheelchair; another two carers do the reverse about 9pm. And at weekends, her father pays private carers to do the same.
Workshop for carers
While there is a lot of griping about the health service, Deirdre says her family’s experience of it has been good and the public health nurses have been great. She also found doing a six-week workshop for carers with the Alzheimer Society of Ireland “invaluable”.
“You find that other people have the same problems. There is a little bit of humour there as well; otherwise you would go mad.”
The participants continue to meet monthly as a support group and she is good friends with some. “That has made it easier.”
During school time, Deirdre usually heads over to her parents’ home after dropping off the boys and gives her father a chance to get out of the house.
Colette, whose three children are older, is more likely to visit in the afternoon or evening.
In the past, the sisters weren’t aware of each other’s daily routines. All of a sudden they needed to know where each of them was at any given time. It was particularly frustrating before they had a proper system of carers set up and the sisters realised the importance of communication.
“We all have our own lives and we are all in this,” says Deirdre. “You’re on a clock all the time. Life is busy with kids as it is; you just have to try to juggle.”
What about time for herself? “I think I am pencilled in for about 2021, on a Tuesday. I think I will be available at 7.30pm if I can get the kids to sleep,” she laughs.
Deirdre sensed her sons were getting a bit frightened by the changes in their granny so she sat down to explain how she had a disease in her brain and how it affected her. And she chats to them after visits, asking them how they found their granny that day.
After a few, frustrating, housebound months, JJ was able to buy a new car last May into which he can push Gertrude’s wheelchair.
They can go out for daily drives now and are able to visit Deirdre’s family in their own home again.
The day of this interview was a good one for Gertrude. She had been around at Deirdre’s, happily having her hair done and eyebrows trimmed, and chose an outrageous shade of pink for her newly manicured nails – much to her “fashion diva” grandson’s delight.
Deirdre has learnt to grab these windows of opportunity for mother-daughter fun. The next day she may be dealing with a grumpy old woman again.
“The one thing I don’t think of is what the future is going to bring,” she adds. “I try to enjoy the moment.” swayman@irishtimes.com
Important for carers to avail of supports
Trying to balance family life with caring for a parent with dementia is the biggest challenge for younger adults.
"In most young couples, both are working to pay the mortgage and get the children through school," says Jean Scanlan, a dementia adviser with the Alzheimer Society of Ireland (ASI) who is based in south Dublin.
“They can’t afford to give up work but then the worry is, who is going to be there with their mother or father.”
If they are lucky enough to have a parent who can act as the main carer for the one with dementia, they still have to be involved, she says. “There is also the challenge sometimes of the main carer accepting help. They feel guilty that they are letting the person down if they have anybody else in to care for them.”
She outlines to families the benefits to both sides if they avail of the support that is out there – such as home-care services or daycare centres.
“It is so important for carers to look after their own health and maintain their own social connections,” she says. But it is also important the person with dementia interacts with other people and is stimulated outside the family.
Keeping communication open across the generations is also vital. Young grandchildren don’t necessarily notice anything amiss as people with dementia tend to relate very well to children and enjoy their company, Scanlan explains.
The ASI has produced a story book, Dear Grandma, aimed at helping children aged eight and over to understand what is happening.
"I think for teenage grandchildren it can be very difficult because they don't understand why their grandmother or grandfather doesn't remember their name," says Scanlan. However, within the past 10 years schools, particularly through transition-year programmes, have done a lot to increase awareness of dementia.
A person diagnosed with dementia can live very well, with the necessary supports, she stresses. While family members need to look positively on what’s the best way forward, she cautions against rushing in to tell your parents what they should and shouldn’t be doing.
“Help where the help is needed but don’t take over,” she advises – for everybody’s sake.
Also be aware your well-meaning friends may not really understand the impact of dementia on your family.
"They offer help and advice but it doesn't work. It's like somebody who doesn't have children telling you how to bring up your children."
Dear Grandma is available from alzheimer.ie for €8
