There are no happy endings in the Alzheimer’s journey.
In recent months, I’ve been sharing our family story in hopes of reminding others in the same situation that you are seen, heard and empathized with.
It's my brother-in-law who, we believe, is in the middle to later stages of the disease.
According to the Alzheimer Society of Canada, this is when the family has to consider at-home care or long-term care. The patient, aside from memory loss and confusion, may have issues with logical communication, hygiene, eating, and sleeping.
In telling our story, please understand I am trying not criticize any of the agencies or employees who are clearly overworked, understaffed and, I assume, underpaid. However, from a family’s point of view, it has been time consuming, frustrating and disturbing.
There are numerous assessments that need to be done so it can be determined if and how much assistance in the home can be allowed and government funded.
As you can imagine, that takes dozens of calls back and forth, appointments and time reserved.
The Ontario Health at Home organization visited the family and determined my sister could have a personal support worker for three hours twice a week.
While this is appreciated, I honestly think three hours is barely enough to allow a caregiver to grocery shop or tend to her own appointments or even nap.
Our first worker did not work out. He came to the house and basically talked about himself — with his feet up on the furniture. His sole job was to monitor. The man watched TV and played on his phone. He lost the client between the family room and kitchen long enough for my brother-in-law to flood the kitchen sink and all the towels underneath.
How can the family feel secure when the watcher needs watching?
Next up was a female personal support worker. She was somewhat better but, again, did absolutely nothing but sit in front of the TV with the client. At least she kept a closer eye on him.
We found out they can’t take the client outside due to an insurance risk.
Both workers said they were booked for three hours, but if we said so, they could leave early. Does that seem proper?
We also have availed ourselves of trained employees from the Alzheimer Society. They were very helpful, giving us ideas of activities we could try to keep the brain active, from colouring books and word searches to simple puzzles.
The dollar stores are really great for arts and craft supplies.
To be honest, I did most of the colouring, but at least it was an activity we could do together.
In the meantime, my sister waits for an opening for long-term care. This can be a very long wait.
If you’ve never been through this process, believe me when I say it is not fun.
Dementia patients tend to wander, so they can’t be housed in a regular retirement or nursing home. They need to be in a secured facility for the safety of themselves and other residents, and rightly so. Trouble is there are very few “locked-down” facilities.
We were asked various questions by one such home:
“Does he need assistance with meals?”
“Might he need help in the bathroom or with bathing?”
“Will he be able to socialize?”
With every added service the staff might have to offer, the price tag went up. We were up to $5,000 per month when they basically said he was too far gone for their facility. They said it in a nicer way, but that was the bottom line.
So, we wait for the dreaded phone call from a facility that may have a room.
Do you know what? We don’t want that call, ever. Once it comes, we are facing the hardest decision of our lives, as a family.
Can we take our loved one and leave him with strangers?
What if he is aware enough to know we’ve done that? Can we live with ourselves?
On the other hand, if we reject the room, we lose our spot, and then when things get unbearable, we are in a worse mess.
No happy endings. No answers. And not much hope.
The bright spot has been that every single care worker we’ve met, even the lazy one, has been friendly, kind and compassionate.
For that, we thank you and we will remember.
