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Tuesday, December 24, 2013

Dementia And Coping With Holiday Stress - Or Not!

Gracie sound asleep with a few of her snowmen.
The stress of the Holidays, and I am talking about the time-frame from Thanksgiving to my Birthday on January 17th specifically, is difficult for almost everyone. There are lots of memories, lots of new stuff to do, and lots of general holiday crap piled on. When you have any form of dementia it is even more difficult because many of the coping mechanisms have been stripped away. Comfortable routines get all disrupted. For me, this Holiday Season is a little bit different.

Since I have been living with my fiancee, Cindy, things have been easier in many ways. But, since she is always there beside me to make things easier, I can do more, and get farther into the stress-related holiday arrangements before I have an FTD-related meltdown. Of course, since she is always there beside me, she gets the privilege of bearing the brunt of my meltdowns. Most of the time she is able to cope pretty well. Sometimes better than others. Here is an analogy: I own a Jeep named Ruby. We can go further and into worse stuff than anyone else before we get stuck. Ummmm ...when we do get stuck we are in deeper and further than anyone else. Get the idea? Holiday-helper stress!

Holiday stress is never just confined to the usual holiday stuff. I needed to change Neurologists, and it happened right after Thanksgiving. My previous neurologist of 3 years plus was having some odd billing practices. I hesitate to say it was insurance fraud because my insurance company was apparently never billed, but I was charged a co-pay every 30 days to get a prescription - a prescription which my GP now does every month at no charge, as would my new neurologist. That adds up to over $400 a year! I did this for 3 years. That is around $1200. There were several other instances of odd charges including $70 to answer 6 yes/no insurance questions. I was totally ripped-off. He be gone! Thank you Dr Mohomad for all of your kind $ervice$!

So, my new neurologist is very intelligent, and seems pretty competent, but is an asshole. He doesn't listen! He is worse than I am, and he doesn't have FTD. He talks fast, gets me confused, and just keeps going. I am sure he was doing some of that intentionally to evaluate my reaction. I did not cope with it very well. I don't remember much about that appointment, and I was there for over an hour. He would say I have amnesia because I didn't remember. He is one of those who reads the literature, and thinks there is a standard profile for this disease, and he knows it all. Dr. Moore actually said that after 4 years I shouldn't have as much insight into my disease as I seem to have. That is what the books say, but if anyone is paying attention there are several of us out here who are still capable of blogging about our disease many years after our diagnosis. Our diagnosis is not incorrect. Every case of Frontotemporal Degeneration is unique. Every case progresses at its own pace, not according to any book. FTD hasn't read that book! He did order a couple additional tests that my previous neurologist didn't have done, and I will get around to them after the holidays. Not sure yet if I am going to keep him, or go shopping again. He is on double-secret probation.
Yeah! Changing neurologists was stressful!

Thanksgiving itself was pretty easy. We went to Cindy's brother's house for Thanksgiving dinner. We did that last year, and it was again a great time. We took Gracie. Well, her brother, Mel, has a German Shepard named Angel. Angel has been through Guard/Attack dog training. Gracie and Angel get along pretty well, and play together just fine. They got along well at Thanksgiving for several hours. After most everyone had left, and things had quieted down, Angel decided to challenge Gracie for Mel's attention. She actually stared straight at Gracie with full eye contact. For most dogs this would be OK, but Gracie is an Akita. NO challenge will go unaccepted. It is the Akita way. I had to pull her off of Angel before she did any real damage. There was much biting and growling. Nobody seemed to really care except me. No damage was done, and the stupid dogs are still best friends as long as Gracie is boss. Oh well! It just added to my accumulating holiday stress.

All mixed in with all of the rest of the holiday preparations, I have had a half dozen or so really bad days, and a few of them were back-to-back. These are the days I rarely write about on this blog because when I am having one, I cannot write anything, and when they are past I can barely remember anything about them. The difference is that now Cindy recognizes when I am having difficulty, and literally takes me by the hand, and helps me through it. With her help, instead of just locking the doors and waiting for it to pass, I can get something dome. Maybe not all that well, but at least I am out there in the world instead of of locked up inside my house. Well, a few really bad days definitely have added to my overall stress for the holidays, but it is better this year than in the past because I am not facing those days alone.

Must have been when I was recovering from one of those really bad days because ...Then, in a moment of weakness, I agreed to host a Christmas Party/Engagement Party/Meet Gracie Party on Saturday December 14th. Cindy did most of the work preparing for the party. For a couple weeks we cooked, and made cookies, and candy, and all kinds of snacks. We totally cleaned and re-arranged the house to accommodate a half dozed crock-pots, and a bazillion Christmas decorations - at least 500 of which are some kind of snowman. Cindy kinda has a thing for snowmen ; )

Here in Fulton County, Ohio, it snowed a little over 9 inches on Saturday December 14th. By 2:00 in the afternoon most everyone had called to say that they were unable to come due to the weather. In all fairness everyone should be safe, and only drive if they feel comfortable to do so. But my FTD side says, "Screw that!". The roads were plowed from 5:00 AM onwards about every half hour, and it was only a little snow. My friends from clear across Toledo wanted to come anyways, but I said "No", because I had a headache, and Cindy was tired, and we had already cancelled. I went to bed, and took a nap. Cindy was putting things away, freezing what she could, and running around in her robe.

It was a little after dark when the doorbell rang. Our friends from Rochester New York had driven through the snowstorm to come visit us. They actually drove through Canada, so it was even worse than usual. They were less than a half hour late for the party! Well ...since they had come through Canada, and most people turn their cell phones off when in Canada to avoid the ridiculous roaming charges, they didn't get the message that the party was cancelled - as if it would have mattered by then.

As it worked out, it was all for the best. We got to spend the evening with our friends without the distraction of having to play host and hostess at a party. We had a nice breakfast out on Sunday before they left. I only wish they could have stayed longer!

But overall the entire party weekend, and the weeks leading up to it, just added to my accumulating level of holiday stress. When finances are as tight as mine are, even a frugal-party where we make just about everything from scratch ourselves has dire consequences. So, add to all of the other holiday stress a ton of financial pressure. Of course Christmas shopping isn't free either. Just more stress added to the pile.

Oh, I forgot to mention that when I pulled Gracie off of Angel on Thanksgiving, I pulled my Achilles tendon. I was totally unable to walk without the aid of crutches for a little over 2 weeks. This was the time when we were getting ready for the party. Just when my heel was starting to recover, I caught a crutch on a box of ornaments, and fell headlong into a pile of decorations. Luckily a nice sharp pointy candelabra broke my fall. Of course I re-injured my tendon, so it took twice as long to recover. I guess I was lucky to get away with a pulled tendon, and a few cuts and bruises. The constant pain, and being unable to walk, and probably the painkillers, added even more stress to the holiday stress pile.

How do I cope with all this additional stress piling up? (Not very well!) I am not going to give any crappy advice because there is nothing that really works for everyone. If I could say anything it is to, "Just get by the best you can, and do whatever you need to to get through the difficult days." Not much help for anyone, me included. First off, holiday stress seems to magnify all of my symptoms, and really points out just how debilitating frontotemporal degeneration can be. I just take a day, or part of a day, off now and then. Close the doors, do not answer the phone, ignore the emails, and take a nap, or watch an old movie. That seems to help, at least some. Sometimes all it takes is a hug, or a cold nose nudging me to get going again. Gracie gives great hugs, and Cindy's nose is always cold, or is that the other way around? Basically I just keep slogging through it trudging uphill through the fog that bvFTD creates until I get past it. I keep telling myself that January is just around the corner with a whole new year, and a whole new set of challenges.

So, that brings us to today. It is Christmas Eve-Eve. December 23rd is when I started writing this, and I will be finishing it up on Christmas Eve. We will have a house-full of happy family here late on Christmas Eve, and Christmas day. Four adults who are still children at heart around a Christmas tree laughing and opening presents, with the addition of 2 dogs. (My youngest son will be here in January for our Birthdays if all goes as planned.)  All of the shopping is done, stocking are stuffed, and the presents are all wrapped and under the tree. Well, actually we have 6 Christmas trees in the house this year, but only 2 of them have presents underneath.  I am excited, and looking forward to it. The best part of it all is getting to spend time with my family. I love the Holidays, and especially Christmas!

The Saturday after Christmas is the re-schedule of the Christmas/Engagement/Meet Gracie Party. Not much work to do in preparation because everything is still frozen from the 14th. I probably will not be making any fresh pumpkin pies because the pumpkins didn't keep well this year. In the past I have had pumpkins on the 4th of July the following year. This year they have become moldy, and developed rotted spots already. I do have one pie left for the party. I make a molasses pumpkin pie from scratch that is tasty and smooth. The trick is to run it through the blender before pouring the custard mix into the pie shells. I have had pumpkin pie from scratch that were stringy with bits of pumpkin, and did not care for that texture.  I sure hope it doesn't decide to snow another foot that day!

Merry Christmas!

Some days are better than others, but Christmas is wonderful!