Let’s face it, being a caregiver of someone with dementia can feel like treading water in an endless sea full of sharks, jellyfish, and piranhas (I know they all don't live in the same water, but it feels that way), forever, with no end in sight. We manage all of the appointments, medication, therapies, and everything else with the goal of at least keeping what we have. To slow the ongoing train of dementia. To keep whatever it is we have right now.
We know it’s a long goodbye, but what happens when we realize that the dementia is winning? When we really start to see them declining beyond where we can feel we can help? When it sinks in that they are going to die?
Sometimes we feel guilty because we feel like we could have done more. Sometimes we secretly wish for them to slip into that next life of peace; partially for their relief, and partially for ours. Sometimes we want to push for every extra minute we can get even if we know that it prolongs our job as caregivers. Sometimes we don’t know what to do at all and feel numb about the whole thing.
These are all normal and part of this weird dementia journey. While a part of them has been dying since before their diagnosis, it’s completely different when we’re facing their physical death. In death, there is no hope for progress, for a cure, for reconnection, for acceptance, for acknowledgment, for love. In physical death, we lose them forever and it’s not really something that dementia trainings and support groups prepare us for.
What can we do? Recognize this stage and adapt- just as you have to every stage before this. Sometimes our loved one is unaware of this decline, but sometimes they are. If they are, allow them time to express their thoughts, feelings, and worries. Don’t answer for them. If they can’t explain, ask questions. I find that asking questions with the intent for me to better understand can sometimes help them figure it out too. If they struggle with questions, I might give options- “is it more like this or like that?” For those who are unaware, it can be easier, but at the same time, we have less insight into how they are feeling or what they’re experiencing. While it may seem less stressful, it may actually be more because all of the decisions are on you, the caregiver.
This may also be a good time to look at preparations. A caregiver I met with this week and I agreed that a meaningful activity he could do with his wife was to bring pictures from their favorite memories with him to the facility where she lives. While he’s sharing memories with her, he’ll also be marking the pictures he wants for her memorial video. This can help him process her failing health while still finding connection and joy today.
What would you want your loved one to do with you if your health was failing? How would you want to be loved during that time? How can you transfer those thoughts to your loved one? How can you let them know you love them in order to let them go? How can you find peace in all of it? All of these can’t be answered by me in a little blog. They are things that you’ll have to examine for yourself (or with your therapist or caregiving coach), but I know that you already know all of it because you know yourself and your loved one more than anyone else ever will.
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