In this series, we will be discussing different aspects of talking about dementia from the first talk you might have with a loved one, to speaking with a doctor, to how to speak with someone who has dementia in a dignified manner.
We have talked repeatedly in our blogs about care, and why routine is important. Setting expectations can help a loved one with dementia keep on track. It limits confusion and frustration. However, sometimes the routine runs into unexpected bumps in the road. We have talked about the need for conversations when changes can be planned for ahead of time. But what happens when the change is sudden and there is no time to prepare your loved one for the change.
The preliminary conversations that need to happen are long before unexpected change comes your way. First, discuss the possibility of unexpected change in order to have an idea of what everyone’s expectations should be. Talk about the possibilities that you can think might happen and discuss the contingencies that need to be in place. Make sure that everyone understands the communication that needs to occur when unexpected changes come up. Do you have a family group chat? Will communication be filtered through one person in order to minimize confusion? Who needs to know what and what is the order of operations? These are just a few of the questions you can sit down and discuss to help prepare everyone for the inevitable change in routine.
Another conversation on expectations is about the emotional difficulty of these moments. Have this discussion with your family and even, and possibly more importantly, with yourself. Understand that with a sudden change in routine, there will be difficulties. Your loved one is going to have some difficulty with this transition. That will include frustration, anger, and sometimes even physical resistance.
It is important to remember two things for these moments: your loved one’s frustration and behavior in these difficult times are not your fault and it is also not their fault. This is going to be a stressful time for everyone, especially if the sudden change is due to a difficult event. It is important to keep your cool. You are going to take some emotional hits, but you are strong enough to handle this. Remember that this difficulty is expected and that it won’t last forever.
Another conversation you should have with your family is what happens when the sudden change is due to a family emergency that would normally have all of you in attendance such as a death in the family. In these situations, there are two options for your loved one: staying or traveling. First, you must understand the level of decline of your loved one and whether they can travel safely.
If they cannot travel safely, then the conversation will likely turn to, who must stay? Other options like paying for in home care or having a family friend stay with them for the time are options but might not be ideal depending on your situation. Caring for a loved one with dementia requires a lot of sacrifices. Sometimes, not being there for big moments is going to be one of those sacrifices. Have discussions in your family about who will have to stay behind to ensure that your loved one is cared for in these moments.
“Your loved one’s frustration and behavior in these difficult times are not your fault and it is also not their fault”
These are some examples of the conversations you should have as you are caring for a loved one with dementia. Unexpected changes or events can disrupt the routine that you have worked so hard to cultivate. However, you can do yourself and your loved one a favor by getting ahead and discussing the parts that you can plan for and limit the unknown.