As they say, there’s no time like the present. If you’re asking this question, then something has happened that’s making you wonder about timing for this conversation. Allow me to share a bit of our story.
When I noticed changes in Mom’s behavior, I talked with my dad and both of my brothers. At this point, I was really just looking for validation, that I wasn’t the only one seeing her be more anxious and forgetting her words. They noticed some forgetfulness but not much else. Since I was the one who was around her the most, I saw the change early on.
Once you notice changes, what do you do next? There’s a fine line between interfering and having “preparation” conversations. There will be a strong emotions, driven primarily by fear, that will come up. I cover these in detail in my handbook It’s Not That Simple. Allow me to summarize here:
Fear is the primary emotion that surfaces but not in the way you would typically recognize it. You’ll see frustration, anger, sadness, resistance, and other emotions surface that are all based in fear.
No one wants to think of how to handle the last years of a loved one’s life. On top of this situation, lies all the complexities and activities already happening in everyone’s lives, with work, kids, school, sports, marriage and more. Can you say “Stress?”
My advice is to remain calm. If your loved one has a spouse or partner, take them to lunch and ask that they pay attention to behaviors around your loved one’s hygiene, medication routine, cooking and eating habits and any out of the ordinary behaviors.
At that point, or in the next conversation, involve other family members or friends in a “general” conversation about “what plans does everyone have in place when the time comes when living alone is not a viable option?” Have these conversations monthly so that everyone stays engaged in any future decisions.
Be sure everyone feels this is a safe conversation, without judgment or action. I’d encourage you to invite your loved one who is demonstrating early symptoms to the conversation as well. Do not isolate them. They know there’s something not quite right.
In the handbook, I talk about the criteria for how to know when it’s time to move a loved one to an assisted living community. In-home care for someone with Alzheimer’s or dementia typically requires a 24/7 commitment as the condition worsens. Those with Alzheimer’s can leave the house and not know how to get back, leaving them exposed to the elements and people who may do them harm. They may also suffer from Sundowner’s Syndrome, where behaviors worsen starting in the late afternoon and continue into the night, disturbing sleep.
I walk you through how to go about researching assisted living and memory care communities and how they’re different in the handbook. For now, just set up an appointment to meet with the community director for a tour. You don’t need to share any information about your loved one. Just explore and see what the options are.
As you can see, starting the conversation about what happens when the mind can no longer take care of the body sooner than later is important. These conversations should happen over weeks or months, not days. Moving and changing the environment of a person with Alzheimer’s or dementia is very stressful on them so take your time to ensure you’re’ making the right decisions around their long-term care.
Need help with these conversations? As an Alzheimer’s and Dementia family advocate, I can help moderate these difficult conversations. You don’t have to be on this journey all alone, as an individual or as a family.