Wednesday, December 12, 2012

FTD and Surviving the Holidays

It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work. Whenever I go somewhere I need a "quiet escape room". Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago.  People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.

I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. Things like travel, airports conventions. Well there like a 2nd home to me. Earlier in the year I went to the AFTD conference and the whole thing was a pleasurable experience. Yes, I did take a break now and then and escape the hustle bustle, but it was an excellent conference.

As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. 

When you have a progressive disease like  FTD, things are going to keep changing and it's always expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult  constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give it and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.

Traveling with FTD for me is easy now. My Mantra NAFW - Not a F--ing Word has saved me many a time. I know longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.

Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.

I spoke with someone last week for 45 minutes who has FTD. He was a great guy who is still enjoying life. He knew he had FTD, but couldn't tell anything was wrong with him. To him he's fine, even though he knew there was something wrong because everyone around him keeps telling him that. His behavior was off, he new it but he's always been on the wild side. He was sad he could no longer work or do what he was doing, but he was determined to enjoy life and keep moving on. Attitude and mindset is everything. Even when your slowly losing your mind.

The AFTD 2013 conference was just announced. It will be in Salt Lake City April 12th. Patients are invited. Last year was the first year AFTD had patients and it went really well. This year there will be much more time for FTD patients to hang together, enjoy themselves and discuss ways to make life better and easier. There will be more to come. 



  1. Thankyou Howard! Absolutely 'spot on' and 'just what the doctor ordered'!

  2. I am going to use this advice when I go back inpatient, very helpful. Yes, I did find out yesterday that I need major reconstructive surgery of my right foot, with a 3 month recooperation. But the doctor wants me to finish the eating disorder treatment program due to the nutritional issues of healing after surgey. So I will be returning to Arizona within the next two weeks. I don't know how much more good news I can take!

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  3. Thank you Howard, for sharing these insights and your advice - it's very helpful, I appreciate it very much. It will help me take joy in getting an hour of two of OK=ness with my Mum. Many years ago, I had to learn that Christmas celebrations weren't going to be 'a whale of a time' for me and my family for other reasons, but FTD has just put the icing on the cake.

    God bless you Howard, with peace and joy wherever the holidays take you. Look forward to reading more of your wisdom and goodness in 2013.

  4. Howard, Many thanks for sharing your thoughts. I find your words helpful to better understand the mindset. I know each person is different with this disease. Peace and stay strong:O)

  5. Thanks Howard for the great post.I.know I should go to family things,but I just cant get myself to go...But Im glad to hear you are finding ways to cope with this FTD thing.And if you still can enjoy it,that is great....We are all proud of the things you are go young man !!!


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