Sunday, July 12, 2015

Let the Swallowing Begin... PLEASE???

Have I mentioned lately just how much I hate FTD?

Last Sunday, I developed a new symptom... difficulty in swallowing.  So far, it is worse when I am stressed.  The first time was when I was trying to put food on the table for our barbecue and to time it all just right.  I finally just stopped eating and, fortunately, no one noticed.

The next time it happened was in a restaurant.  My husband and I had stopped for lunch.  Now, I had been a little stressed over a near-miss with another vehicle.  No, I wasn't driving... haven't done that in over five years... but it scared the crap out of me.  (Not literally, thank the Lord, since that is another symptom that I haven't reached yet.)  By time we were in the restaurant, I didn't think I was still stressed.  I had no problem swallowing my latte, but my favorite sandwich was a different story.  I normally scarf it down since I love it so much.  That day, it took me a full hour to eat half of it.  At least I had a treat for lunch the next day... must find the good!

Then it happened again yesterday, again in a restaurant.  My husband had taken me out as a treat to a nicer restaurant while we were out running an errand I needed to do.  I was doing fine until about half way through the meal.  Again, I think I kept it hidden from my husband.  It's not really that I want to hide it from him, it's just that every time it has happened so far has been in a social setting.

I guess he will know all about it when he reads this blog entry though, won't he?  That's probably for the better anyway, as it is something that he should know about.

The scary part of all this is that I realize it will only get worse.  I experienced the problem three times in one week.  I understand that eventually, swallowing anything will be extremely difficult, if possible at all. Surprisingly, I have been told that swallowing anything the consistency of water will also become difficult.  They actually make and sell a product, Thick-It, that thickens liquids so you have a chance to swallow.  Scary that we will have to thicken water for me to drink it.  I am not endorsing the product since I have never used it, but I have heard from caregivers of instances where it has helped.

Fortunately, this morning, I remember the words said to me by the neuropsychiatrist who gave me my diagnosis of FTD.  He said, "Go and enjoy everything you can as well as you can for as long as you can."

I cannot fully explain just how frightening it is to not be able to swallow.  I cannot deny that this new step in decline is scary as hell, but I can deny its ability to stop me from enjoying what I can.

That's all I have for today.  I don't care to dwell on FTD today.  I will worry about that tomorrow...

Wednesday, July 1, 2015

Signs, Signs, Everywhere are Signs

I am sure I mentioned it before, but about a year ago, I found a psychologist, right here in our little town.  The best part was she is a specialist in dementia and ran a program for dementia patients at a local hospital until it merged with the other hospital.  She has been a Godsend, believe me.  It gives me a place where someone understands and can give me ideas of how to cope and for me to help those around me cope with my FTD.

At my last appointment, I was discussing my frustrations at getting my husband to understand the effects of this disease.  It seems the one we discuss at every appointment is how he overloads me with information or interrupts me when I am focused on something.  The result is that I end up blowing up at him and then I hate myself because of it.

After my husband picked me up from her office and we were making the short trip home, it came to me!  Notes!!!  He is the king of post-it notes anyway, so maybe that would be a way to reach him.  I made up signs here on the computer in a font to make the letters almost an inch tall.

The first was:  "One Thing at a Time!"  This really sums up all the issues, but puts it right there. Because he is trying to focus on this problem anyway, when he overloads me, I wait a little while and then explain what he did.  The most recent example I can think of was a couple days ago when I was outside doing some weeding and trimming.  He came out to help and then started explaining that our grass clippers had broken last year and did I want him to go to the hardware store to get new ones.  I said that we would need new ones but I didn't care if it was right then.  So, he asked again in a different way.  I snapped and said, "Please, just do what you want!"

That leads to another sign I made, "Say It Once and Don't keep Repeat."  When he does that it only succeeds in getting me to tune out because it is too much information.  The other one in the same vein is "If I Wave You Off, Stop Talking!"  My husband is a true Type A personality and, until he retired, was a busy healthcare executive.  Have you heard the adage "Explain it 3 times, in 3 different ways." He has always followed that.  I could never have worked for him, I don't think.  I guess he needed the other person to look him in the eye and say, "Yes, I understand that you want...."  But as usual, I have digressed.  When he starts telling me something more than once, I would find myself making the motion of trying to erase the chalkboard to stop the unnecessary information.  That used to frustrate him, but when I explained why I do it, he understood and stopped getting frustrated when I would do it and he really does stop talking.

Then the other big one:  "Do Not Talk to Me When I Am Cooking!"  That one is taped to the microwave above the stove.  I have a propensity to grab pans out of the oven without a mitt, forgetting how hot they will be. I have burned potholders by laying them on a hot element.  I really need to pay attention to what I am doing.  Plus, I usually make up recipes as I go.  To follow a written recipe is next to impossible for me, but I have gotten even better at throwing things together and figuring out what herbs and spices would go well with what I am cooking.  Problem is, I can't repeat the same dish again, but that's okay.

I am sharing this because it is working for us.  I can't wait until my next appointment with my psychologist.  I am sure she will be proud of me!  I can not promise this idea will work for everyone, but it sure is worth trying.  The reverse type of signs, reminding me to do certain things is next on my agenda.
https://welcometodementialand.wordpress.com/2015/05/12/what-no-one-told-you-about-dementialand/

This is a link to a document that just slaps you in the face about the realities of all forms of dementia. She doesn't pull any punches at all, something we should all read.