Over the years of dealing with FTD and getting to know many caregivers, one of the hardest things to deal with seems to be loneliness. For most of us, our kids are growing, or grown, up and these are supposed to be the years to reconnect with our spouse, go on vacations, be spontaneous. This is not what any of us signed up for or could have anticipated in our wildest dreams. Just on a day to day basis, the house gets mighty quiet at night when he goes to bed at 8:30, and I’m still winding down from the day and/or waiting for adult kids to come home.
I think it’s the day to day stuff that is the hardest. Many FTD patients become apathetic – that’s often a first sign, very often mistaken for depression – and they just don’t want to do anything, even things that are important to others, or that would have been important to them before. Of course, it’s a double edged sword because, if you do get them to go, they might act in inappropriate ways, say things that are embarrassing, drink too much, etc., and you might just end up asking yourself why you were so insistent that they come. But our memories play tricks on us. We long for things to be the way they were, but then forget that the person who lives in our memories, isn’t here anymore. More and more, we just find that it’s easier to go by ourselves, but then, there’s nothing easy about that either.
Over the course of this journey, I’ve lost count of everything I’ve done alone. Weddings, funerals, reunions. The things that hurt the most, of course, are the things for the kids – games and sports meets, First Communions, Father/Daughter/Son events, teacher conferences, doctor appointments . . . . I could go on and on.
On the other hand though, when he does come, it really means a lot, even if he acts kind of out of place. One particularly memorable event was a father/daughter pizza making contest for a group our youngest is in. We really didn’t expect him to go, and we had a few guys in line for a back up plan, but he surprised us by saying, yes. Well, not in so many words. I think, what he said was, “I suppose she really wants me to go.” But what’s important is that he went, and he had fun, and so did our daughter. He has surprised us on a number of occasions. They don’t outweigh the times he hasn’t gone, but we’ll take what he’s able to give. I remind the kids we need to just be thankful he came this time. I know it still hurts, but I feel like they’ve handled it fairly well for the most part. As the kids have gotten older, it stings to hear them talk about memories they have about their dad and that there aren’t very many good ones. I wish I could change that for them. In the end though, I know I did the best I could and now it’s up to them to decide how they want to deal with it. My dearest hope is that they don’t let resentment eat themselves up and, instead, they eventually find their way to forgiveness.
I don’t think you ever get used to it exactly. I’m not sure it even gets easier. I think, like most things involving grief – for this is very much what it is, grieving a loss of what was – it comes in waves. Some days you’re sailing along smoothly, confident in your new reality, ready to take on the world, and then all of a sudden you find yourself crying in the bathroom because someone came up to you at a party that you haven’t seen in years, asking about your spouse, and you get to watch “the look” come over their face – sadness, sorrow, pity – and then they go off to the dance floor. You’re happy for them that they have each other, but also miserably sad for yourself because, even if he was there with you at the party, it wouldn’t be the same. It sucks. And it’s always when you least expect it.
So, we grieve, and move on. We know we’ll grieve again. And even if it isn’t full on grief, as we get ready to go out and face the next social event, there will always be that twinge of loneliness, of longing for what was and won’t ever be again. Our grieving comes in stages and waves, always knowing that there is more to come. It may look different over time, but it’s always with us. This, too, is dementia.