I could really write this post in three words –
STOP. EXPLAINING. YOURSELF.
But let me elaborate.
By the time your loved one reaches the middle stages of FTD, they are, generally speaking, often beyond comprehension of most of what you are saying. That’s not to say they don’t understand the individual words.But their understanding of what they mean all joined together and in context is very skewed.
Their grasp on the social niceties for example, is almost non-existent. So asking them to speak quietly, or stop staring will fall on deaf ears most of the time. You see, it’s not that they don’t know what you said, it’s just that they don’t understand why it’s important. They think that they have as much control over their behavior as they always did. And therein lies the problem. They have the ability to make you think that too.
As I have discussed before, we tend to give our loved ones the respect and consideration that we have for the last twenty, thirty or forty years. It’s a natural thing to do. It’s the same if the FTD’er is your parent. Any relationship based on love and respect falls back on these things during times of stress. You have an invisible understanding that you just don’t do or say certain things. FTD takes that away. The FTD brain has so many holes caused by the degeneration that appropriate and seemly behavior become a thing of the past. But not to them. Not to your loved one. They behave just as their FTD Taskmaster tells them to. It’s like having that little devil sitting on your shoulder. “Go on, do it!”. But now there is no angel on the other shoulder – their conscience, telling them not to. Everything is fair game. Even to the point of hurting, physically, mentally, emotionally.
The bastard disease is the Ringmaster in the circus that has become your life.
So, if you accept that your FTD’er is no longer capable of deciding what’s best, you must come to the conclusion that you know what is. Yes, I know it’s not the position you want to be in. Deciding someone’s fate is overwhelming. But one of you has to make decisions and that someone has to be you. Here’s the thing. Once you accept that, you must also accept that your decision is final. No do-overs, no “well maybe’s”, no “we’ll see”. You can say those to your children. Your children can tell when you are undecided. But when it comes to decisions for you and your loved one’s safety, you cannot compromise and dither. The ultimate end to this is that you must not stop to explain. Explaining leaves room for choices. You know that your loved one can’t choose. They think they can, but when they do, it’s often a poor choice. Why else do we have advance directives? Because at the time the person makes those decisions, they are have a clear mind and are making rational decisions.
Explanations leave you vulnerable to “No” .
Explanations offer a chance for the person with FTD to make a poor choice.
Explanations answer the “What?” with “Because” and the because will probably be unacceptable.
Because they don’t understand the “Why” or the “How”.
Because FTD has addled their brain and their thoughts can’t get through the tangled mess.
You explain because it makes sense to you.
Because you have done it for years. Because it’s respectful to give the “Why”.
Because you love them.
Explanation can cause more confusion and provide fuel for outbursts of defiance. You’re explaining because it makes sense to you. I have said many times before – “Don’t ask -tell” and this tags on to explanation. Don’t ask a question, don’t give an explanation other than “we are going in the car”, or “Sit down. Put on your shoes”. Anything more complicated will illicit either a blank stare or “No”. If they do ask “Why?”, keep it simple. Say “We have to go somewhere”, or “We are going out”. Try to keep these conversations short, keep them busy but don’t hurry them or they will get flustered. Let them put their shoes on/take a shower/walk to the car at their own speed. Your frustration will rub off believe me. Just make sure you allow enough time for slow movement and bite your tongue.
Explaining comes naturally to us. We are accustomed to people needing to know why we want them to do something or what we are talking about. Your loved one with FTD no longer has the capacity to rationalize these things. For them, it’s about the here and now. You may have heard the term “WIFM?” – “What’s In it For Me?”. This is the perfect acronym for your FTD’er. They are not being selfish. Their sense of self is diminishing fast. Selfishness relies on a purposeful action that will benefit only one. FTD brings out instincts in a person that are usually controlled by social mores and respect for others. Filters and inhibitions are eventually so eroded in the FTD brain that thinking of anything other than mere existence is impossible. There comes a point when even that is gone and risky behaviors result. The concern for self-preservation deserts your loved one and it will be up to you to protect them. It’s a jaw-droppingly scary position to hold – Protector of the Vulnerable. But you can do it. You will make all the right decisions. Trust your love and your instinct.
Just don’t explain why.
There is another aspect to the explanations also. In a perfect world, your family would respect and understand why you do the things you do. Sadly, people in your family may not appreciate your now-seemingly bombastic approach to caring for your loved one. If they are not around FTD much, your behavior may seem akin to that of Attila the Hun. Their denial may lead them to the conclusion that you’re a know-it-all control freak, with Hitler-like tendencies. I have to say here that my own experience was not like this at all. My family and friends were nothing but supportive and helpful and for that I am eternally grateful.
Well, to hell with those people if they refuse to accept your explanation, demonstration, literature and.or pleading. They are human yes, but they should respect your decisions. They are not entitled to an opinion unless they are there 24/7, see what goes on in an FTD house and contribute to the s**tstorm that your day can be.This goes for those curious people at the grocery store too. I hear time and again about families who just flatly refuse to accept that it’s as bad as it is. But they don’t ever want to come over to your house and experience it either. I know of many people whose already effed-up lives are further disrupted by constant denial or even obstructive behavior such as encouraging ‘normal’ activities in an person with FTD who cannot possibly understand the why or how.
Don’t explain anything to them once you have come to the conclusion that they are ignoring your advice and wishes. Stop validating your actions with people who are ignoring the inevitable. It’s not worth the energy. They will either come around or they won’t. But you have enough on your plate.
When you’re down and confused…….
Love the one you’re with 🙂