FTD – Disrespectful in the Extreme

hand kissing

I have been reading and listening to those caregivers who are finding it so very difficult to relinquish the grasp on their long relationships. FTD certainly takes its toll on those.

It’s tough, I know. You live with someone for thirty, forty years and, if there is love, there is some degree of respect. Respect for the person. Not just the outer being that everyone sees, but for the true inner soul that you met, fell in love with and spent at least half of your life with. We have respect in varying degrees for a variety of people in our lives. Parents, teachers, any kind of authority. This is what we are taught if we have good parents and role models. At various points in our lives, we challenge the authority, but in general, we come back around to believing that anarchy just won’t work for us. You can be a hell-raiser for a while, but most people follow a path that holds other people in esteem and tolerates human frailties.

The respect within a loving couple –that indefinable desire to please and honor the other’s wishes and needs –that is a whole different ball game. It begins in the early stages of a relationship when you realize that this person likes you, loves you even, for exactly who you are. Not because they’re your mother, father, sister, brother etc. Not because they have to. Well, they kind of do if they’re your family -right?

This new person that you met, they like you because they think you’re funny, kind, generous, hot. Especially hot if you’re in the throes of teenager/early twenties-hood. Not that hot goes away, just gets replaced by an understanding that it’s not the most important thing. Anyway, respect. Respect is built over the years as you go through triumphs and tragedies together. It is founded on love, bolstered by familiarity and chipped away at sometimes by behavior.

holding hands

And there’s the rub. Once the behaviors of FTD kick in, that’s when the challenge begins. The respect you built over all those years is stood up to by FTD. The bastard disease is no respecter of anything really. Your love, your strength, your once-held firm beliefs that you could stand together and conquer anything.

FTD respects nothing. Not your heart, love, home or family. The respect that you hold so dear is now so severely tested that you will need to find new ways of holding on to those ideals and values that you have built over the years.

  • Stop trying to handle things the same way as you have all your life together. Your joint life is somewhat over. Face it. Your joint life, bank accounts, tax returns, trips, dinners. Joint anything is now so changed beyond recognition that you have to face up to the fact that you are doing this alone. You may have family and friends, but the two of you? That’s done.
  • There will be a time, in the early stages, when you can get your ducks in a row, have your loved one sign advance directives as to their wishes, get your other household affairs in order and so on. But as the bastard disease does its heinous work, you will start to notice that your loved one still thinks that they are capable of making those decisions with you. They’re not. Don’t kid yourself.
  • The decisions you make will be based on what they told you during those early stages. Those times when you sat and cried together about what was to come. Those times when you were in disbelief about the hand you had been dealt. The times when you respected your loved one’s opinions, choices and decisions. Because you always had.
  • The time comes when you have to use that knowledge to guide you through the middle and late stages. And that’s painful. Because you respect them. Or rather, you respect the person they once were and the decisions they did, or would have made. Painful because you don’t want to do it alone. But alone you are, and alone you will decide. You will respect what they wanted. I had a very supportive network around me, family, friends, coworkers, medical professionals. They all respected my decisions because I was very clear about what my husband and I wanted. But I still felt alone.
  • The one person you have always relied upon to support and guide you through life’s bumps can no longer help you. But you still respect them. You still need their input. It is very hard to put that aside and make the leap yourself.
  • Stop asking their permission. They can’t choose anymore. They will say no to just about everything – day care, home caregivers, travel plans, clothing and food choices. Sometimes it seems they say no just for the hell of it. So, don’t ask, tell.
  • Respect their dignity, humanity, personhood. But not their decisions. Five-year-old husbands or wives rarely make good choices for themselves. Drinking, driving, risky behaviors. Reserve the respect for the person you knew. the person you love, but not the choices they try to insist upon.
  • Stop second-guessing yourself. You’ll do the right thing. Good old FTD will make your loved one tell you you’re a bitch/bastard, you’re ugly, you don’t care, you’re having an affair, you’re withholding money/food/pleasure from them. They will spend your money, crash your car, upset the neighbors (who cares about that?). They might even try to divorce you, sell your house, grope a friend, try illegal drugs. They’re not them anymore remember? Don’t sweat it. The FTD would like you to give it everything and then some. It’s already taking everything you hold dear, so don’t give it respect, save that for your loved one’s pride and dignity.
  • Respect yourself. That’s one of the biggest accomplishments you can make in the FTD typhoon.

I respect that you are making this journey. I respect that each of us is unique, our situations similar but different. I respect the differences and make no judgment as to what is right for you. Respect yourself as a wife, husband, father, mother, partner,friend. Respect yourself as a human being with flaws and an identity. Respect your loved one as the focus of what you do but not what or who you are.

Respect yourself.

 

 

10 thoughts on “FTD – Disrespectful in the Extreme

  1. I so needed this today. We have placed my dad in assisted living and sometimes he seems so normal, I think to myself, “why have we placed him there?” But I know why. Because FTD is a life stealer and life changer, and is unpredictable to the point of harm. Thank you for your succinct way of putting it. Your posts help me and my family so much!!

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  2. It is hard to respect myself or even know who I am. My husband has been in residential care for 16 months and feel like I have had enough but must continue to fight for good care because FTD has taken every part of him away. When I see a glimmer of who he was I am taken through the roller coaster of emotions. Respect may not be one of them as I hear others voices telling me – you are strong, amazing but really I am just hanging on.

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    1. Pat, it is almost impossible to control the emotions, I know. As much as you get used to dealing with the practicalities, that emotional bond is impossible to break and cuts into you every time there is the slightest wink of recognition or familiarity. I feel your pain, have felt your pain. I still have it and that part of my journey is over. Words seem so cheap somehow to describe what we feel. Igf hanging on is all you can do, then just do that and don’t expect any more of yourself.

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  3. I need to have my ex-life partner follow you. FTD lept into our lives 6 yrs ago and I did everything mentioned and disrespected our boundaries, thus ending our relationship as it was. Fortunately, we are still close and now understand what that episode was all about. It was not ME, it was FTD. She wants us to be together again and I have this fear, this knowledge, that FTD will kill her respect for me and I will just die. She will have to live o with the memory of FTD, not ME!

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    1. She won’t lose respect for the person that is essentially YOU, Susan. If she loves you (in whatever capacity – lover/friend/sister etc) she will always love and respect you, whatever you do or say. It IS the FTD not you, Susan.
      Hang in there, make the most of every day.

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  4. Debbie…My husband has FTD…I have commented on the FTD page…also posted a picture of us. You are an inspiration. The above article hits home. I see and hear almost all the things you mentioned about a LO with FTD. I am going to print it and take to the Nursing Home where my husband Bob and his sister is. (His sister has FTD also). I REALLY BELIEVE THESE FACILITIES NEED TO READ AND EDUCATE THEMSELVES BETTER ABOUT THIS DISEASE….MOST HAVE NO CLUE….AND I GET IRRITATED WITH THEM!!! THANK YOU AGAIN….

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    1. Thanks so much Shirley. I am so very sorry about your husband and his sister. that’s got to be the pits. You are so right about educating facilities and just about everyone else about FTD. Most physicians have no clue, but still take it upon themselves to diagnose and treat symptoms before they even really know what’s going on. I wish you peace on your journey. Feel free to drop me a line anytime. πŸ™‚

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