Most times I try and keep the flow of this blog upbeat — there are so many positive things in this world, I just can’t sit idly by and let them pass me without dipping my toe in their pools. But, as many of you know, there are a lot of sad things out there, too. Some things we can change, others we can only deal with.
A good friend at work was telling me her story about her grandmother who was slipping into full-fledged dementia. K said she could see it coming for over two years, but many in the family did not (or chose not to see). Dementia comes in many ways; it slips in uninvited and refuses to leave. How and when it affects their chosen hosts is more up to Fate than choice.
Our conversation was more from her grandmother’s point of view — did she recognize her children? Did she know her grandaughter? Moreover, was she upset that she “should” know these people but just…didn’t?
Seeing a loved one go through irreversible illness is heartbreaking. Young people with inoperable cancer, friends lost in senseless car accidents, all are part of our lives that we truly have no control over. Every one of those experiences change people’s lives forever. Those who survive hurt the most, and have the hardest time accepting and moving on. But we do. We have to. But Dementia is a gradual experience. You are alive and thinking and reasoning one minute and you are forgetting things the next until one day you don’t remember what you’re supposed to remember.
Back to Grandma. K told me this was her first experience with anyone she knew slipping into the grey of tomorrow, and wasn’t sure how to handle it. I, in my naive way, told her that as long as her grandmother was “happy” with her every day life, as long as she was relatively healthy and alert, that was the best you could ask for. The hurt, the pain and confusion usually come from our inability to accept the fact that we’re not a part of their memory any more.
Which leads me to today’s thoughts. I wonder what the world seems like from inside a dementia patient’s head. I have heard they see and talk to people long dead, or remember 50 years ago as if it were yesterday. Does that frighten them? Does it matter to them? Often patients don’t remember their kids, their grandkids. Do they feel guilty about that? Are they sad about that? Or does it not matter in their emotional scheme of things?
I find it fascinating that, at least at the beginning, K’s grandma talks normally about day-to-day things: who she talked to (even if they are no longer on this Earth), what she did this morning. She mixes up nurses and nieces, but still processes information the same way. It’s as if her reality is real, yet different. To her, her brother dead 15 years really sat next to her bed and talked about little things. What’s the big deal about that?
I don’t know if that’s good or not. Or whether the word “good” is even appropriate here.
People with wild imaginations also talk to people who don’t exist. Even as a writer, I find myself wandering off on a mental tangent through my character’s mind, the end having nothing to do with her/his life — or mine. I suppose the difference is that I can come back to today and know I went on a mental adventure. Dementia patients do not.
I did not wander through the Internet, looking for symptoms or shared experiences. I didn’t want the distractions to change my feeling quite yet. I have these fears and thoughts because I sometimes wonder if that’s my fate down the line. I adore my kids, my grandson, my husband and friends. The thought of having all this love inside of me fade away because I don’t remember them hurts more than I can say.
This blog has been brewing for a few days, and I wanted to hear your take on these things. Have you gone through this sort of separation? Do you know of blogs or websites that share these kinds of experiences without becoming a panic attack? If you do, please share. If not, don’t worry. I’m sure you have experiences of other depths that you might share one day.
And no matter what, experience and explore and remember as many new things as you can while you can. For I can’t believe it doesn’t matter in the memory of your soul.
Which is all that matters in the end.