You hate to see them that way, but you want to see them.
You feel guilty if you don’t go, saddened if you do.
Keeping a relationship going with your loved one with FTD is difficult at the best of times. Once they are institutionalised, you are faced with a whole new set of decisions.
Just making the decision to ‘place’ them somewhere other than your home is one of the most difficult things you will ever do.
If, like I did, you try to make their new place as ‘homely’ as possible, you may be very upset when they don’t even notice the favorite pictures on the wall. The photographs of your grandchildren. Or a memorable trip you took together.
They won’t notice the cashmere sweater you got them for Christmas.
Hell, they probably won’t even notice if you don’t visit.
It hurts that your efforts to overcome your grief, sadness and anger are often for nothing. It takes a superhuman effort to ‘keep it going”.
Superhuman effort to keep your needs under wraps.
We only try to ‘carry on’ for our own benefit. It’s not selfish, it’s self-protection. We use the practicalities of resolving issues to paper over the cracks of the situation.
It’s out of control. Often you feel out of control. You desperately hold on to everything you hold dear. Your routines and schedules. Your little habits. The things you did together.
The visit comes around and you fit it in to your routine. You have a new routine every week it seems. Your FTD life, albeit changed now that you deal with it outside your house, continues.
If you still work, you focus on that during the times when you’re not FTD’ing. It’s a welcome distraction. Anything so you don’t have to think about what you did. What’s happening in your life.
People marvel at your ability to cope. But it’s all a sham. Another superhuman effort to disguise the fact that inside you are breaking up.
The one person who would help you through such difficult times is the very cause of your anguish. But they can’t help you.
It’s like watching them drowning in sight of the shore, but your feet are in encased in concrete and you cannot run into the ocean to save them. The ocean of FTD is unrelenting. Its tide washes over everything, scooping up your life until it becomes flotsam and jetsam scattered over the sand of time.
Visiting can either be a relief – you are reassured that they are being taken care of physically so that you can share emotions (which they no longer have).Or it can be a trial of frustration and sadness because they no longer acknowledge your caring and love. Sometimes it’s both.
So it’s tempting at times not to go. Just not to go. The physical pain caused by the emotional anguish can just be too much. But then, the guilt comes. Guilt is a powerful soldier of the FTD General. It will follow you around, sit on your shoulder, peck at your head. Guilt is good at steering you back to what you don’t want to do.
But you do want to do it.
But then you don’t.
Yes, you do – oh wait, it hurts.
Visiting is such a dichotomy. You’re damned if you do and you’re damned if you don’t. I can’t tell you not to feel guilty if you don’t want to go. Sometimes you just feel like staying home and being ‘normal’. Relaxing and not doing anything in particular. But there goes that guilt again. “You shouldn’t be doing that! Not when your loved one is suffering so.”
The suffering is yours too. They don’t know they’re suffering. In a place with good care, their needs are being met. They don’t really have ‘wants’ anymore, just needs. And that is one of the things that is so hard to understand. They don’t ‘want’ anything. They don’t ‘have’ anything. They don’t want their own stuff. They don’t ‘want’ their other life. They don’t ‘want’ you.
They don’t ‘miss’ anything.
And even though you know they are not doing that by choice, it still hurts.