Her laugh is endearing.
Her smile, when she shares it, infectious, as it causes you to smile back.
She looks at the woman seated across from her, at times with so much curiosity etched on her face that you can’t help but wonder what she’s thinking about.
Or likely what she is struggling to remember.
The woman seated beside her at the table refers to her by her first name.
"Norma, look at me."
"Norma, it's time for lunch."
“Norma, let’s have some soup.”
Sometimes Norma will respond. Sometimes not.
When asked why she calls Norma by her first name, Tam MacPhee – the woman feeding Norma her lunch – looks into the woman’s eyes and says, “Because if I call her mom, she doesn’t always remember she’s my mother.”
And then she might not get any response at all.
For Tam MacPhee and her mother Norma Tedford, their relationship has changed.
It is one of a countless number of situations where the child becomes the parent.
And the parent becomes the child.
For these two women their roles have been reversed not by choice, but by Alzheimer’s.
Alzheimer’s has robbed Norma of her memory. Robbed her of her common sense. Robbed her of the way she used to behave.
It has stolen things from her daughter as well. The meaningful conversations between a mother and daughter are gone. The weekly lunches at a restaurant have stopped. The trips they used to take are a thing of the past.
Because so much has been taken away, it makes the rewards, in their infinite simplicity, mean so much.
“I don't look for rewards, but I find them when she thanks me for tucking her in at night and says, ‘I love you too,’ uses my name sometimes, gets out a couple of thoughts that make sense, walks by and hugs and squeezes me for no reason,” Tam says.
As the family waits for a nursing home placement for Norma, who is 68, Tam (one of Norma’s four children) has taken her mother into her home. And it’s a busy home at that.
Living here are a husband and wife who own and operate a trucking company. Two boys at home – one a teenager, the other almost a teenager – who both play rep hockey. An older son studying elsewhere. Two dogs that bark when someone new comes to the door.
The first thought was it would be temporary.
Norma has been here since last June.
Tam could sign a paper that would expand a nursing home search to anywhere in the province, instead of just locally. It might speed up the process of finding her a placement. But what if Norma was placed in a home in Sydney? In Halifax? That’s too far from Yarmouth, her daughter says.
“I at least want to be there once every day to feed her,” says Tam, who worries otherwise her mother might fade away to nothing.
Once when Norma had come back from a respite, she had lost eight pounds.
Tam MacPhee calls them her tricks of the trade. The ways she can get Norma to eat. First there is the hand holding so her mother doesn’t swat the food away. Then there are the heaping spoonfuls to maximize every bite of food she takes into her mouth. There is the eye contact to keep her from becoming distracted. Calling her by her name so she focuses on the person who is feeding her.
“She could try to get up and leave 10 or 20 times during her meal,” says Tam. “And rarely does she pick something up and eat it. She just plays with it. She can’t make her own decisions that I need more food to survive.”
It is hard and at times exhausting to be caring for an Alzheimer’s patient. In a sense it is like looking after a toddler.
A gate blocks off a set of stairs in the MacPhee home and stools are strategically placed at the entrance to a hallway to prevent Norma from wandering. A doorbell is attached to the door of Norma’s room that rings in Tam’s bedroom so she knows when her mother wakes up in the morning.
Because Tam can’t stay at home full time due to her job, home care workers come in for shifts. The family receives seven hours of personal home care, which Tam has to be home for, and 10 hours of respite. She spreads those 10 respite hours out so she can go to work and do errands. Still, sometimes it takes a long time to leave the house. If someone new is coming in Tam has to go over four pages of notes on ways to make tending Norma easier.
Because her children are very active in sports and travel a lot for games, there are weekends when Tam needs – and wants – to be with her children. On these weekends she hires people to look after her mother, although sometimes such scheduling doesn’t always work out. Sometimes there are last-minute cancellations.
“One time I had to leave on a Friday and I came back on Sunday. My brother did one shift but it was still $500 for me to be gone for the other people I had to hire for shifts.”
The more weekends she’s gone with her kids, the most costly it becomes, even with government funding help.
The family has gotten respite beds in the past, but they’ve also been denied. One seniors facility is concerned Norma is a flight risk. At another facility she was very agitated and difficult to control. Both facilities say Norma’s needs are greater than what they are equipped to handle with the size staff they have. So these respite options are no longer available. The last respite Norma qualified was in Caledonia in a secure Alzheimer’s unit. That is a two-hour drive away.
Tam says because some local facilities feel they aren’t able to cope with her mother’s needs when it comes to a respite bed, they’re also not going to be able to take her in when her turn comes up on the waiting list for a long-term bed, unless it is in a secure Alzheimer’s unit, which is the type of care Norma requires. Not all facilities have such units and for those that do the wait may be a few months, or it could be a year or longer.
“I didn’t know seniors could be refused because they require too much care,” Tam says. This has all been a learning curve.
Her mother does take medication to help calm her down and while at times she is agitated or upset, she’s not always like this, says Tam. A lot of the time her mother is happy. Very busy, admittedly, but content.
“But we are left feeling that mom is labelled as a bad senior,” Tam says. “Patience, love, hugs and kindness is what they need when they are confused and upset.”
And families need to feel supported too.
Sometimes Tam will use the word mom.
“She’ll look at me, ‘Mom?’ and I’ll say, ‘Yes, you’re my mom,’ and she’ll say, ‘Oh, okay.’ Other times she won’t react at all.
Still, Tam is always on the lookout for those glimpses of her mom.
In a way Tam knew what to expect. When she was a teenager, her grandmother – Norma’s mother – also developed Alzheimer’s and lived in the home with them.
Tam’s children also use Norma’s first name a lot.
“They don’t use grand-mom a lot anymore, which is kind of sad," Tam says. "They use Norma because she responds and answers to it, whereas they could say ‘grand-mom’ and she doesn’t know that anymore, except for once in a while.”
But they hug her, they dance with her – Norma loves her 50s and 60s music – and most importantly they love her. Tam says having her mother in their home has taught her children a lot about compassion.
Tam, meanwhile, admits that she worries for her own future. Will Alzheimer’s lay claim to her as well? All she knows for now is that she’ll never give up on her mom.
“Even though she says words that totally don’t make any sense with the conversation, I know she’s still in there trying to connect the pieces.
Sometimes she’ll walk up to you and say, ‘Can I tell you something?’ and you’re like, ‘Yes!’ but then she says, ‘Oh never mind,’ because she can’t remember what it was. You want so bad to know what she’s thinking.”
Other times she may get out three thoughts in a row that make some sense. Not quite a meaningful conversation, but for Tam close enough.
“She’s 80 per cent the patient, and 20 per cent of the time my mom,” says Tam, referring to the circumstance life has dealt them.
Except for when hugs are traded. It’s then that the percentage sways the other way.
During those tight embraces when Norma holds Tam in her arms, it feels like she hasn’t forgotten that she’s her mother.
Because no mother could forget how to hug like this.
Read Tina Comeau's column: Thoughts of four special women
In April 2014, Tam MacPhee shared an update about her mother Norma. Click here: Our seniors deserve better than this
Read an update on Tam and Norma: Yes Norma, you're still my mom