Dear Lighthouse Keeper,
My loved one is doing ok right now, and I want them to be as independent as possible for as long as possible. I call every day to check on them, and they call me throughout the day. Sometimes the conversations are great, and sometimes I feel like I’m having the same conversation over and over. They tell me everything is ok, so I want to honor their wish to stay home. I usually go once a week to shop for groceries, and end up clearing out the fridge…I can see that it is different around the house: mail piled up in different places, not sure if they are showering, and the housekeeping isn’t quite what it normally would be. I can’t really tell when or what they are eating. I don’t want to make them defensive, which sometimes happens; and again, I don’t want to strip them of their independence. It does seem like they need help though.
Working to be the Respectful Child
Dear Respectful Child,
You are honoring your loved one to the nth degree, and they would be proud to know how hard you are working to preserve their dignity. You see, dementia is working to steal our dignity. It hits us where it hurts and is relentless in trying to steal the best parts of ourselves.
Our humanity, though, can’t be stolen. As dementia progresses, the best things about us might be harder to see, but they are there. Another cruel reality is that those closest to us are challenged most to see them, since dementia also works so hard to pull the wool over our eyes.
One of the hardest things to embrace about this journey is that we are put in a position to make decisions on behalf of someone who has never needed our help in this arena. This person taught us to be the person we are now. They likely managed the world confidently and would be horrified to know that they no longer do so.
We are forced to embrace the truth that decisions will need to be made based on what we know about our person, many times without being able to ask them in the moment how they feel. This will likely feel very wrong, but we must remind ourselves that if we are living the dementia journey, we will not be able to think reasonably as we used to. We know this person best, and we are going to act on their best behalf with the intention of putting their needs first, knowing that they would never judge us for being put in this difficult position.
Leaving a person with dementia to their own devices, to allow them their independence, might cause more harm than good. Yes, that sounds hard to believe, but if we consider the conversation from a different angle, isn’t it true that we are putting expectations on someone who is living a dementia journey to maintain a lifestyle that is now impossible? We are expecting them to manage things that they may no longer be able to manage. We are expecting them to be who we know them to be, someone that dementia is taking away from us.
The hope is to find a way, respectfully and lovingly, to recognize when the time has come, and work to take the pressure off of our loved one by accessing the support that they need. Sharing only the necessary tidbits to help our loved one feel safe and supported, not overwhelming them with details. Gently using the ‘assumptive close’, holding their hand to help them navigate their world.
If you continue to try to get your person on board, you may find yourself fighting an uphill repetitive battle. Less information is better in this arena. Keep it simple, and trust that you are doing what is best to protect your person.
Forgive yourself. This is likely the hardest thing you are ever going to do.
The Lighthouse Keeper