YARMOUTH – In January the Yarmouth Vanguard shared the story of Tam MacPhee and her mother Norma Tedford ("Yes Norma, you're my mom") Norma has Alzheimer’s and her family has been waiting for placement in a senior’s care facility. It’s been a long wait and during this time Tam has cared for her mother in the MacPhee home, balancing between work, her children and caring for her Norma. In her own words she provides this update.
In January a special story about my mother Norma Tedford was published. I have been overwhelmed with the response. One lady said it best: "Your story was the most heartwarming and heartbreaking article I have ever read."
Mom's condition is slowly worsening. She is busier, pacing, picking everything up and getting into everything. She has no concept of what may harm her or be dangerous.
She seems to be in a cycle where for a few weeks she is extremely busy, followed by a week of being able to get more thoughts out and ask questions. This is followed by a period of a few days where she sleeps longer and wants to nap, followed by a day where she has seizures and is wiped out. This makes one-to-one care even more important for her.
We have tried different medications. Some help with appetite and manageability, but they seem to trigger seizures more often. Some drugs dope her up. It is hard to know what is best? Everyone has an opinion, especially since in a facility two nurses usually have a wing of 14 others to look after. They would rather she be content and sit and not get into everything. For family, of course we like to see her able to talk, walk, eat and function with a smile on her face.
They say my mother needs to be in a locked unit. A locked unit is supposed to be a safe place for residents to roam freely but for Norma there are many dangers in these units. She can find up to 10 toilets to play in on these units – her hands are drawn to water. She wraps electrical cords around herself. She handles things breakable like picture frames, she gets other people's personal stuff, she trips over walkers, plays with wheelchairs with people in them. And she can easily work herself into a frenzy.
I have observed units for hours. The nurses are busy and sometimes both are gone with another resident for 20 to 30 minutes or longer. Sometimes long periods of time can pass before they are able to lay eyes on some individuals. With residents free to roam in these units, I can't help but worry about my mother knowing what she is capable of.
As I wait for permanent placement for Norma, I struggle with what she will face at that time. I’ve been told she is at the top of the list, which means only an adult protection case could bump her. I still have no idea when placement will happen as a resident has to pass away for her to get placement. That is sad and hard to dwell on, but that is how our system works.
Originally when we started this journey we were told Norma would likely be placed by October or November 2014. But she doesn't qualify for a regular bed. She needs more specific special care, so she needs to wait longer. In a recent meeting I could get no answers as to why this happens, other than this is our health care system.
I would strongly encourage the health minister, MLAs, health department officials – anyone making any decisions for seniors – to spend a few hours in a seniors’ locked unit and observe. I don't mean take a tour or have the home’s director with you. I mean take two to three hours on your own and observe. Then make your decisions about whether two workers are enough for 14 residents.
Is this all our seniors deserve? Their bare necessities being met? A bath and their hair being washed once a week? Some sitting and looking at each other and staring at walls for hours on end? Sure, there are activities that last a couple of hours, but not everyone can participate as they may not be a good fit.
Norma recently went on respite in the only closest place that can take her, which is in Caledonia. She had a rough start with extreme confusion, leading the nurses to wanting her to have more meds, which just made her dopey, sleepy, not wanting to eat and eventually leading them to request one-to-one care.
Once she had one-to-one care the rest of her stay went very well. Finally I could get a little break and not worry too much for a few days. There are a few local respite beds but she doesn’t qualify for them as she needs too much care. Again I feel all arrows point toward one-to-one care. Her doctor agrees. All of the 40 to 50 homecare workers she has met agree. We are told there is no budget for one-to-one care. Sometimes upon request it will be approved for short periods of time.
Simply setting her free in a lockdown unit may be my biggest nightmare yet.
She was booked in Caledonia for March Break but due to a flu outbreak she couldn’t go. This put considerable strain on our family as I had a trip booked with our youngest son. I scrambled to hire private care just two days before flying out at a cost of $3,000. This kind of took the fun out of our trip as I was constantly on the phone to make sure all shifts were covered and I spent what little money mom had left to make sure she was not alone. In a respite bed Norma would pay $20 a day with the rest government funded.
My mother is a low income senior on a waiting list for permanent care. I am saving the government money by tending her in my home. When unexpected expenses like this one occur should Norma be left with the bill? What happens to others in the same situation?
I've been asked if there are other family members who could step in and care for her. If they could take vacation days to cover my vacation or weekend away for 24 hours a day, one-to-one care. But their jobs aren’t flexible like mine, or they won't for their own personal reasons. Some people don't feel they can handle it.
I'm not sure what I should do or where to go from here. I've talked to local MLAs, some higher-ups in the province, the director of care for this area. I've made sure mom’s story is known and I advocate in every way I know for seniors, including my mother, to get better treatment at all levels.
I won't give up once she is in long-term care either. I need to have her close enough that I can feed her and help with her care. Not every nurse is going to have 45 minutes to feed her a meal, as that is how long it takes.
The more I see and learn about seniors, the system, the lists, the understaffed homes, what is available, what runs out due to the budget being tapped out – the more I am determined to push forward for all seniors.
Seniors without family coming in are especially in need of tender love and care. I encourage anyone to volunteer their time in these homes, just have a chat, feed them, rub lotion on their dry hands, comb their hair, read them a book – anything will help. They have long lonely days.
As I mentioned, Norma is at the top of the list. The list is hard to describe and understand as I feel it has too many branches. I'm told by fall the list will work better for higher need seniors as things are changing. However that will not help my mother’s case.
And so we continue to wait.