FTD Family Matters



The word conjures up different things for everyone.

Togetherness, love, anger, jealousy and everything in between.

Your family can make or break you. They are who you fall back on in times of stress. If you have that kind of a family that is. Not everyone does. Your family can be blood relatives or someone you met along the way.

It never ceases to amaze me how much some people – not just family – expect of you. How much they expect from you. I have arrived at a stage in my life where my family are even more important than ever. But I am also at a stage where I will not include people in my life who bring drama, bitterness and any other kind of negativity. Oh no, I’ve had quite enough of that thanks.

We somehow assume that our family will have that unconditional, never-ending love. The kind that even when tested, will never wane.family-fight

The kind that, in a strong relationship, will weather the FTD storm, despite the very many challenges that come along.

That being said, people will often feel guilty that they aren’t doing more. They take out their guilt on you. They may lash out and ‘blame’ you in some way for their own perceived shortcomings. You on the other hand, just get on with everything. Because you have to. Someone has to keep the ship afloat and that person is you.

You don’t have time (or the energy) for the luxury of other people’s drama. You have enough of your own.

Some of you may have family members who talk the talk of being supportive, sympathize and and tell all their friends about how challenging it is to have a family member with FTD. But they never actually do anything.

Well, here’s the thing. Your journey with your loved one through this bastard disease will likely be the hardest thing you ever have to do. Those bystanders have no clue what you are, have been or will be going through.

The bystanders will gratefully accept compassion and sympathy from their friends and other family members, as if they are the ones doing it. Don’t let them steal your thunder. You are losing your loved one. You are living each day on a knife edge. You are giving up the life you thought you would be having and instead, are drowning in a sea of dependence.

Most of these thoughts have occurred to me well after my journey was over. Make no mistake. There are certain members of our family and good friends too, to whom I will be forever grateful. But they know who they are. Everyone knows there are friends who are closer than family. But, for some reason, certain family members think they have ‘rights’ to more attention, more knowledge than others, just by virtue of being family. I would disagree with that.Frustration

Just to reiterate – I am eternally grateful for those genuine acts of kindness shown to me by anyone throughout our journey. FTD is a heinous, ruthless, bastard disease. But to me, one does not act kindly towards someone with thought of reward or compensation of some kind.  I guess I have been a little shocked lately to learn that there is some kind of expectation of repayment.

But that’s just me. Maybe I am ungrateful, unappreciative. I don’t think I am.

Everything I did, I did for love. I did not do it for some kind of reward. Believe me, there is no shiny award at the end of the FTD road.

Except maybe self-respect. A sense of doing the best that one could. Of knowing that you gave your all for someone else and would have traded places with them in a heartbeat if you thought you could save them.

I don’t think you should have to pay any more than that. I don’t think that your behavior should be judged ‘thoughtless’ by those who have not walked in your shoes.


They can be the bane of your life or your savior. Thankfully, most families have a little of each.

I love all of mine. Even if they drive me crazy. Even if they don’t understand. Or even try to.

I love them anyway.


4 thoughts on “FTD Family Matters

  1. You put this just as it is. I am the one with the FTD in my family. It has appeared to me, as I wander down this FTD path, that it is perfectly clear who will and won’t be able to walk beside me. Those who won’t, will think they have and those that do, will mourn me. It is funny, that as I feel things/abilities slipping away, other things are becoming crystal clear. I sit in my silence, watching them all…knowing and not sure how to teach them the grace I myself am trying to learn.


    1. You are so right Susan. Grace is an excellent description of what we have to learn on our journey. Sadly some people don’t know what that means, nor do they have the sense to try to learn it. It’s sad but true. Thank you for your thoughtful response.


  2. Reading this post reminded me of a poem I wrote about 25 years ago when I felt rather ‘stretched’ by the people around me. It helped to relieve the tension for me and also for a friend who wa going through a very bad patch. She reminded me of it when my ‘Mr’ died a few weeks ago. I will share it her:

    Ping I feel like a piece of elastic Yesterday was a long stretch, not quite taut, but close Who pulls the ends? People who have names but hide in groups … family friends colleagues shop assistants neighbours …

    I love them all, I need them all On most days the tension relaxes On other days I fear it will twang I am … mother wife friend colleague housewife chauffeur … I which group do you hide?

    Toni B


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