Frontotemporal resourcefulness – get crafty!

At first, this post was just going to be an uploaded pdf file [find that here –  FTD Resources] – a list of excellent links  for FTD caregivers.

However, this week, many new FTD people have come into my life. With a multitude of issues going on for them, it seems like an endless supply of problems for which there are scant resources.

Although I have the list of links, websites, books etc. it seems that what people need is a particular, down-to-earth, list of how to stay sane in this maelstrom of FTD. I don’t have an exhaustive list of course. Far be it from me to be the FTD guru. (Although I know someone who probably is).

Guru

I don’t presume to know even a minute amount of all there is to know about FTD. Just my own experience and what I see and hear from other people traveling the same path.

You do have to get “crafty” though. Even though it may go against everything you’ve learned in your relationship thus far. You’re in unchartered territory here as far as behavior and handling it goes. You’ve probably never seen some of the things you’ll be or are seeing. FTD the bully makes people do things.

  • Your loved one may behave in ways you never thought possible.
  • They may say things you never thought you would hear coming out of their mouth
  • You will have to do things you never imagined yourself doing.
  • This includes creative fibbing (otherwise known as lying), pretending something is what is not, and getting crafty about your own behavior.
  • You will have interactions with people that once may have made you embarrassed but now are a matter of survival.
  • Your love will be tested to the limit

The key here is love. Love for the person you knew. Love for yourself. Love for what is right.

Love treeUnfortunately, unrequited love is harder to handle.

TEN IDEAS FOR NOT GOING AROUND THE BEND YOURSELF

  1. It is VITAL, d’you hear me? VITAL that you listen to your own body, your own mind, when they tell you to stop, slow down or walk away. It could literally mean life or death. Sometimes, in an aggressive FTD person, walking away is all you can do. As heartbreaking as it is, you have to mentally walk away a long time before you may physically have to.
  2. Take a break. I mean it. Get a respite grant (www.theaftd.org) and have someone else do the caregiving for a couple of days. I know, you have no-one. No-one else understands. No-one else can do it….There’s a million reasons why you can’t. Find just one reason why you CAN. You have to go on. What’s the worst that can happen? They are angry at you for going away? So what? You won’t be there and once you’re away, they won’t care. There is often a genuine fear of abandonment in FTD, but that can come just when you go out to the car or the store. Since time is often irrelevant, two hours or two days, it won’t make any difference.
  3. Get help.There is something for everyone out there. It may take some time and effort, but it’s there. Get someone to help you. Research – call, write, email whatever. Get everything that is due to you. There are agencies that just do that. Match you up with the right services.
  4. Accept. Accept that nothing will ever be the same. Accept that he/she is going or gone. Once you do that, you can cope more easily. If, like I did, you try and keep things normal long after normal is gone, you will become frustrated and bitter. These two emotions will interfere with your ability to cope. Acceptance is not resignation. Acceptance is the strong response to an unchangeable situation.
  5. Don’t try to rationalize. Your loved one is not the brilliant engineer/artist/doctor/financier that he/she once was. For me that was one of the hardest things to understand. I am not known for my ” glad sufferance of fools” shall we say. Not that my husband was a fool, quite the reverse in fact. Like many people afflicted by FTD, he was intelligent, articulate, and quick witted. But it was very hard for me to talk with the child he became.
  6. Agree. Agree with everything they say. You can always back out or change your mind – even minutes later. They won’t realize what you’re doing (see, crafty!)
  7. Blame someone else. I found that “those people” were very useful in taking the blame for just about everything that happened that my husband didn’t want. The bank, the DMV, the government, the doctor, anyone that was fairly anonymous that my husband didn’t know well. The ambiguous “people” at the bank were idiots because, when he lost his debit card (for the third time) they took ages sending him a new one. In fact, it never arrived. Perhaps because I hadn’t ordered it. After my telling him it was on its way about three times, he forgot all about it. Moved on to the next gripe. Probably how many dirty dishes there were for just two people.
  8. Lower your standards. Yes, I know, you like your house, yard, clothes to look nice. But let’s face it, there’s not much point in having a lovely redecorated house if someone’s going to trash it, poop on it, rearrange it or generally abuse it now is there? Better to spend the time helping them get through the day with the minimum of fuss. The mess may drive you nuts at first, but once you feel the benefit of not having to repeat yourself multiple times daily, you will be less stressed.
  9. Respect. When you have been in a healthy relationship with someone for several or many years, you develop a comfortable pattern. This established security is severely threatened, then demolished by FTD. But is difficult to let go. Difficult in the extreme. How can you stop giving your loved one the reverence they deserve and have had for so long? Well, you can’t of course. But the respect and love now have to be of a different priority. You still have them but they are trumped by the practical needs. The cleaning, the dressing, the prompting, the directing. It’s weird to have to show or tell your partner of many years which leg to put in his pants first.
  10. Independence. One of my top priorities was that my husband maintain as much independence as possible for as long as possible. When it was no longer possible, I pretended he still had it. He believed me. And that was the most important thing. That he never felt like he wasn’t doing things on his own, even when he wasn’t. I never let him believe that he relied on me for anything until he was no longer aware of how much he actually did. The only thing that was an issue for a while was money. He could never get used to the fact that he had no income of his own. It made him feel less than a man. But even when I gave him an allowance every week, he would lose it or hide it, then say I hadn’t given him any. A no-win situation, but it passed.

And that’s the secret really. This too shall pass. Everything passes. Each stage or phase within a stage passes to the next, sometimes with barely a day in between for you to catch your breath. But you must. You must catch your breath. The bastard disease cannot be allowed to claim more than one life at a time. There is so little to combat it, but the one thing you cannot do is allow it to claim you too.

Be crafty. Invent new ways of handling it. Get creative and make your life easier. The hardest part is changing from the life you once knew. But you can do it. You really can. Use all your tools.

Love, honesty, respect, kindness, laughter, and tears.

They all help. Somehow you will get around the obstacles and on to the next challenge. Your solution will be crafted with love and so it can do no wrong.

quilled hearts

 

6 thoughts on “Frontotemporal resourcefulness – get crafty!

  1. Oh, Deborah! Thank you, thank you, thank you for these wonderful, wise and timely messages. I just came in from a day out of the hospital with my husband. I was completely exhausted and when I opened my inbox … there you were. I laughed (and cried) hysterically through the whole thing about this perfectly termed ‘Bastard Disease’. It was exactly what I needed to put things back into perspective and get my head back on straight. Again, THANK YOU!!!!!!!!!!!!! Much Love!!!!!!!!!!!!!!!!

    Liked by 1 person

  2. One more thing. When you tell other people, as you are doing, how to cope and survive with you and your spouse’s dignity as intact as FTD allows, then you making something positive out of what you both suffered. This is brilliant.

    Liked by 1 person

    1. Thanks Hilary. Just speak from the heart. Painful as it still is at times, I would hope that a little insight and realism might help someone put things into perspective

      Like

  3. My husband was diagnosed with this horrible disease exactly 2 years 2 months ago. After the shock wore off, the reality hit me as to what we were up against. I have watched him age backward now into a four year old who wants to help me with everything but does not see how much harder that is making everything. I love reading your blogs. No one understands unless you live it, not even my grown kids! I hate this horrid disease and fully know what I am up against. I know longer fear it but just dare it to break my spirit! Please keep up the blogs! It helps so much!

    Like

    1. Thank you so much Tammy. It’s nice to be appreciated. May I recommend, if you use Facebook at all, that you join the group Frontotemporal dementia Information and SUpport? (that’s if you are not already a member). There are hundreds of people there all going through similar experiences to you and I. I’m sure you will find it very helpful.
      I wish you a peaceful journey……

      Like

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