Frontotemporal Visitation – yes or no?

Prison barsTo visit or not to visit, that is the question?

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.
That hurts.
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.

Visits are overrated, I think.driftwood

6 thoughts on “Frontotemporal Visitation – yes or no?

  1. Great post. That’s a very powerful image of watching someone drowning while you are helplessly fixed on the shore.

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  2. I’m always amazed at how well you capture the ordeal of having a loved one with FTD. Your words are poetic in their power.

    In the case of my sister, who had the behavioral variant of FTD, I think the three to four times a week I visited added to the quality of her life as well as improved her care at the facility. While it’s true that she forgot about me as soon as I was out of her sight, I believe that on some level, she knew she was loved and that a feeling of well-being remained in my absence. We were lucky in that it was clear from my sister’s interest/expression that she continued to know who we were. We were also lucky to have had a companion for her the last two years of her life. There is no doubt in my mind that my sister formed a relationship with this wonderful woman who spent 40 hours a week with her.

    FTD affects everyone differently. In my sister’s case, she steadily regressed until she had the traits of a baby. We were spared the aggression and paranoia that some people develop. In fact, my no-nonsense sister who was a senior VP at Disney took on a sweet and gentle persona as she became sick.

    The bottom line is that we, as caregivers, have to do whatever it takes to stay healthy. I was fortunate to be in a position where I could retire from teaching two years after taking on my sister’s complex affairs. I hate to imagine what shape I would have been in had I continued to work full time while being her guardian, trustee, and advocate for the past 5 years. I have nothing but empathy for those whose burden can’t be lightened.

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    1. Thanks Dale.
      I am very happy that your sister had a relatively peaceful last couple of years.I used to wish for that all the time for my husband. He was always a bit of a “Type A” guy, and FTD brought out the very worst in him. All the things I didn’t like about him but had always overlooked with the help of love, came to the fore as the disease took hold. To the point where it was not safe for me to be at home alone with him anymore and so he went into a facility (or three).

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  3. Thank you so much for this post. I am told how amazing I am, but it is sham. I know it. We have a 12 year old and it hurts me to know that she is living the double life too. The person we need to help us, my husband – her daddy, has been stolen by ftd. He is still home with us and the look on our girl’s face everyday when she gets home from school lets me know she is holding her breath against what chaos she might find. I do it too. Nobody can understand it unless they are living it. Your words are the closest expression of the truth of the ftd nightmare. Comfort is not the right word for how I feel when I read them – understood is a better word. Thank you.

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    1. Thanks Karen.
      I hope that if I can shed some light on the fact that no-one is going through this alone, that will help raise awareness of this heinous disease. I was ‘lucky’ in that my children were adults when my husband was diagnosed and as we travelled our journey. Still, it was really difficult for them, dreading every text or phone call, wondering if he had hurt one or other of us.
      I wish you well on your journey.
      Debbie 🙂

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