Getting older is pretty inconvenient but simultaneously glorious because you have a wealth of experience to draw from – except when you don’t, because of dementia. Historically, I didn’t have a clear understanding of the impact of dementia on a family, I mean how bad is being forgetful? I forget stuff all the time. But it’s more than that.
You know in the cartoons where someone is hanging off a cliff by their fingertips and the protagonist is watching as each finger slowly loses grip? That’s partly what it’s like to watch someone you love lose their orientation to the world around them, the what and the when of the day to day. It’s a helpless feeling and it’s scary. You don’t know when they will fall. You don’t know if there’s anything you can do to help or if by intervening you will make things worse.
The fingers individually losing their grip is symptomatic of the incremental loss. I’ve lost people and it’s been immediate, final and excruciating. I can’t say objectively that it’s worse or better but dementia means you lose pieces of them, one at a time. It’s like a puzzle. As you lose the pieces, the picture is unrecognizable. It’s an extended state of grief and you go through the phases of loss only to go through them all over again when another key piece disappears. You’re left sitting there with a box of stuff that doesn’t make any sense and sadness. You’re so lucky to still have them but it feels like it’s not “them” anymore and it’s so disappointing. It’s being ripped off of time with someone you love.
Perhaps most painful is the feeling that we forget things that aren’t important to us. Inconsequential things slip our minds. Picking up milk. Taking out the garbage. Turning off the straightener. But people? People aren’t inconsequential. People hurt when they are forgotten. Being forgotten is a horrible, lonely feeling. How do you explain that to a kid? “I don’t want her to forget me, mommy.” Nobody wants to be forgotten. And we know deep down it’s a biological process and a disease and we matter and we are not forgotten because we are unloved. It is just so hard to live in fear of being left behind by someone who is sitting RIGHT THERE.
It makes relationships more challenging to navigate. Normally in relationships you can set boundaries around what constitutes acceptable behaviour. With dementia, it’s like groundhog day and you’re starting from scratch all the time and setting those boundaries only upsets people. So you need to distract, ignore and try not to take it personally. It is so difficult because the resulting behaviour can be so challenging that there’s a sense of dread about interaction, but a painful awareness of urgency given how limited the remaining time for interaction might be. There is so much guilt that comes with that. Not wanting to call because it might be awful, but wanting to call because you don’t know how long there will be someone to answer the phone.
It’s also difficult when the capacity to be independent is so variable from day to day. You want to honour that you are dealing with an adult and they are entitled to choices and to direct their own lives but you also want to keep them safe and unharmed because they matter. Motives can be misconstrued and it can result in tension. It’s thankless and at times, impossible.
Dementia is so hard. For a family it is extremely painful and upsetting. I don’t know what it feels like to incrementally lose capacity, but I do know what it feels like to love someone who is. I guess from one person dealing with it to another, my advice would be to practice good self care, reach out to your loved one’s care person and feel the feels when they come. If you have resources to explain this to kids, please drop them in the comments. Otherwise, as Jerry Springer says, take care of yourselves and each other.