Peter Slater says he noticed his father showing signs of Alzheimer’s disease six years ago. There was forgetfulness, he was getting lost in familiar places and there were the personality changes like paranoia and restlessness. Peter’s paternal grandfather also had Alzheimer’s disease so Peter watched and waited as the symptoms progressed.
Getting a diagnosis and access to care was challenging right from the start. Peter’s mother has MS and Peter’s father had been acting as her main care provider so as the symptoms of what Peter suspected to be Alzheimer’s progressed, Peter knew he had to get involved – a task easier said than done.
“My parents were very private people,” Peter says. “They had support from neighbours but they were becoming more and more isolated.”
Two years ago Peter walked into Sarah Krieger’s office looking for help. Sarah is the Education and Support Coordinator for the local chapter of the Alzheimer Society. Peter says reaching out to Sarah was the best thing he could have ever done.
Peter looked to Sarah to tell him that there was indeed something to be concerned about and sadly, there was. But as soon as the conversation started, so did the support. And this is important because in our far-reaching, rural community, the Alzheimer Society is a very important resource that we have that will help connect the dots and take some of the weight off the shoulders of those providing care.
“It was hard to get my dad to agree to go to see a doctor but Sarah helped,” Peter says. “We got a referral to a memory clinic and there is also a geriatric outreach team that can do home visits.”
But as is usually the case with this terminal disease, once things started to settle, things immediately fell apart. Crisis hit and Peter was scrambling once again.
“We tried to get supports into the home but my parents refused,” Peter says. “My parents and I weren’t seeing eye to eye. I was really worried about my mom. My wife, Cheryl, and daughter in law, June, were so supportive and understanding. My son was taking in frozen meals, checking on them while trying to balance work and his own family but it still wasn’t enough. I was afraid to hear the phone ring. There was so much stress waiting for the worst case to happen and it was a strain on my family and on my marriage.”
Peter says that Sarah was a huge support during all of this craziness.
“You have to realize that the Alzheimer Society is unique in its service,” Sarah says. “Often we make contact with individuals and their families shortly after getting a diagnosis of Alzheimer’s disease or other related dementia and then we provide support and education as it is needed. If a family or individual needs us, we are there from diagnosis to death. It is a difficult reality but it is a reality.”
When the crisis came, Peter, his son, the family doctor and nurse and Sarah all had to step in to figure out how to get Peter’s father to the hospital for an assessment. It was not an ideal situation but it was no longer safe for Peter’s father and mother to remain on their own any longer.
Peter’s father was held for seven days for testing and then he was placed, as an emergency case, in a long term care home in Scarborough – the only bed available for him. But the family was relieved as it meant that Peter’s father would have 24 hour nursing care in a facility that understood his special needs. This also meant that Peter’s mother could take some much needed time for herself.
In time, Peter’s father got a bed in Bancroft’s long term care facility and he was finally closer to home. Peter’s mother moved to a retirement home so that she had more supports available and things started to feel slightly more normal for the Slater family.
“There is certainly stigma attached to this disease and the diagnosis,” Peter says. “We have to talk, in our families, and be open, because through all of this there can still be really good quality of life.”
Peter says his father is happy now. He’s putting on weight and he enjoys the activities in his new home. He believes his father is being well taken care of and that takes some of the pressure off. It’s hard enough to know a loved one has a terminal illness but having help providing care makes it more manageable. And Peter says that Sarah still helps his family.
“Things turned out extremely well for us,” Peter says. “Looking back I see that, emotionally, we were not really able to navigate. You need a road map for this and Sarah has that road map.”
That road map includes ways to get more people to understand the disease, how to access the scarce resources that are sometimes available and how to stay emotionally supported through the process. When someone has a heart attack there are really defined steps that you follow. With Alzheimer’s disease every case requires families to break new ground – or so it seems for those who are not connected to support.
For Peter and his family, it was that support that kept them safe, got them through crisis and now it continues to monitor them this period of calm contentment.
As for Sarah, the one and only person in our local Alzheimer Society branch office, she’s positive, optimistic and thankful.
“I have the opportunity to meet some of the most incredible individuals,” Sarah says. “They have shown me the true meaning of love, dedication, patience and understanding. I feel blessed to be able to what I do. I truly believe that we will find a cure but until then, I will do what I can to support and educate those in the North Hastings area.”
On Saturday Jan. 31, the 5th Annual North Hastings Walk for Memories will be hosted at the North Hastings High School from 9 – 1pm. The event is an opportunity to raise awareness, not only for those with the diagnosis but also for those who provide care to their loved ones. This is the biggest fundraising event for our local Alzheimer Society and all dollars raised stay in North Hastings.
With your support, no one in North Hastings will face Alzheimer’s disease alone.