Sunday, November 29, 2015

Choices

Much of our life comes down to choices. Where should we live, who should we marry, how many children should we have. Now these are certainly life changing choices. Sometimes, though, it is the smaller choices that give me the most trouble.

Since FTD, making choices is one of the most difficult things for me to do some days. Where would I like to go? What would I like to do? What shall I make for dinner. These choices are certainly not life altering, but definitely will make a difference in making my day to day life as comfortable and calm as possible.

I am finally learning to make some choices that I recognize just might make my life with FTD a little easier. For instance, decorating my home for all the holidays. Yes, I tend to get carried away and have multiple totes full of decorations for every holiday. This year, during Halloween season, I was busy and feeling down a lot of the days. My choice then was to not decorate the house. I put something up on the two exterior doors to great those who visited and pulled a my Halloween table runners out of the totes. That was it. Amazingly, the holiday still came and I was still ready for trick or treaters and the house still seemed somewhat seasonal.

Once I realized the world had indeed not come to an end, I did the same thing for Thanksgiving and just grabbed a few things out of the several totes for that holiday. Once I put the real turkey on the table, no one cared and I didn't feel like a total failure.

So, along comes the BIG one! I have at least six full size totes of decorations, plus one of lights and one extra large one of tree decorations and a second extra large one full of larger decorations for out on the porch. I am not even counting the one tote full of Christmas shirts and sweaters or box with the tree itself. (Yes, I use a fake tree. Helps, since I'm allergic to real ones.) There's also a wreath stored under the bed. I am sure you get the picture. Yes, I love holidays and making them special for my family and friends.

All this led up to a big choice. How much to decorate for Christmas? I asked my daughter if we needed the tree up. Her response was an immediate "Yes!" She will be arriving here on the 23rd, so she offered that we could decorate the tree on Christmas Eve. Uh, no. If I am going to put it up, I want to enjoy it for the whole month. So the tree stays. Determined to force myself to cut back, I only asked my husband to bring up the tree, the decorations, the decorations for the porch, my large nativity set and what I normally put on the mantle. That is only two of the regular sized totes, the rest are still in the garage. I made the choice and I stuck to it.

What amazes me is that the house still looks well decorated with only about half of my usual stuff. Plus, there is the added bonus of not having as many things for my grand"kitties" to knock down.

The other wise choice I made was to not try to do it all in one day. My husband helped me decorate the outside on Friday. Saturday, I put out most of the decorations, except my big nativity set which I set out on Sunday. Hmm... rather appropriate to do that on a Sunday. Plus I assembled the tree. Tomorrow, I will decorate the tree.

I have also convinced myself to use some gift bags instead of decoratively wrapping all the gifts. Most will go in bags, with a couple wrapped ones for each person.  Today, when assembling the tree and putting the top decoration on, my husband was making "helpful" suggestions on what I could do to make it just a little better. I told him that it doesn't have to be 100% perfect, we can accept 80%. Then I realized, I needed to believe that too. I think I am well on my way to accepting that.

After all the decorating, will come the cookie baking.  Nope, not cutting back on that. I get so much pleasure out of sharing my cookies with family and friends. I will stretch it out to more days, but not cut back. Fortunately, most of them freeze well, so I don't have to worry about making them too soon.

I think I have made a lot of good choices for the holidays. I am darned proud of myself... finally learning to respect the limitations that FTD puts on me. It is much easier to embrace them than it is to fight them!

Sunday, November 22, 2015

Thanksgiving

I feel like writing something completely different this week. This is the week of the Thanksgiving holiday, time to be thankful. Of course I am thankful for all the usual things, my husband, my daughter, my sister, as well as all the rest of my family, including my step-family who are to me just family, no "step" about it! I am thankful for the roof over my head, my comfortable bed, that my house is warm and dry and that we never go hungry. I often went hungry as a child, so that one is much appreciated.

Sometimes, though, it is the unexpected things, the kindnesses of people I did not know well or the beauty I had never seen before that day. I'll start with that one. Yesterday, my husband was driving us to our local hardware store. The day was chilly, in the low 40's, but the sun was shining brightly and the sky was as blue as it gets. Add to that, the beauty of a couple white puffy clouds and some white intersecting jet contrails, it was just glorious.

When we arrived at the store, it was much more crowded than I like. If you have read previous blogs, you know that I, and most others with FTD, do not deal well with crowds. Most of the employees (or as they advertise, the helpful hardware folks) in this store are very knowledgeable and helpful. This day, however, we were assisted by a young man who knew a whole lot less about what we were looking for than I did. I think he was a relatively new employee. Between the crowd and the frustration of him, I was ready to leave. Just then, in walks Carla, my favorite person there. Carla knows everything! Plus, she picked up, probably a year or so ago, that something was different with me and asked my husband the next time he went in alone. After asking for my permission, he explained my FTD to her. She was always patient and helpful, but now when she sees me, she gets a beautiful smile and greets me, steers me to less crowded areas and calmly figures out just what I need. Such a patient and loving soul.

It is things like this that make me thankful from day to day. In the same vein, this past Friday, my sister took me out for the afternoon. First stop was our local CVS drugstore. Once I was at the register, I was confusing myself and getting agitated. I looked at the clerk and said "I'm sure you remember I have a rare dementia."  She assured me it was quite okay, to take my time and not worry about it. I said I figured that it was okay since no one was behind us in line. Her response was that it didn't matter who was behind me in line, I should always take the time to do the transaction to  prevent getting agitated and that she could always call someone else up to open another register.

Second stop was again another store. When I made it up to the register that time, I searched and searched and could not find my credit cards and of course started to panic. I do not usually carry much cash because it confuses me, but fortunately that day I had some. I dug our the $23 that I had, bummed five from my sister and paid in cash. Of course, then, I found my credit cards right where they belong in a pocket of my purse. He, just like the woman at the drug store, reassured me to stop worrying that I was the customer he was dealing with and it would take as long as it took to complete the purchase while keeping me comfortable.

Third stop, the craft store. My sister was shopping in the fabric department and low and behold, the only person working the department is someone who assisted me a couple years before. From what I was buying at that time, she realized that I must crochet nylon scrubbies and told me how much she loves them. I offered to bring some in for her, that I would not take money, but she should pay it forward sometime or put a little extra in the offering plate at her church. We recognized each other and she again thanked me. Even though I find it difficult to make them anymore, I did have a basket full of them at home and made the same offer again. It just made me feel good to see her again and brighten her day a little.

Fourth and final stop, a late lunch. Our server was looking a little harried and I asked if they had been busy and he said it had been very hectic and lots of grumpy customers. I told him he was lucky then because now he had our two smiling faces to cheer him up. We ended up having a really good time with him and he was ever so very friendly and helpful. We mentioned that we would be coming back for dinner for my sister's birthday with the whole family. He pulled out his phone and made a note to request to work the evening shift that day instead of the usual day shift so that he could serve us again, so I guess he had as much fun as we did.

So this week of Thanksgiving, these are the kind of things I will focus on. These are the kind of things that make this disease bearable, every time I experience what I call "random acts of kindness."

Sunday, November 15, 2015

Knocked Out by a Simple Cold

Every winter, for as long back as I can remember, I have ended up with a heavy duty case of bronchitis. I catch a cold, it becomes bronchitis. Just the way I work. I have become one of those obnoxious people who go to extremes to prevent it. I use the antiseptic wipes in stores to clean my cart. If they don't provide them, I use hand sanitizer gel to clean it. I put on a face mask in doctors' waiting rooms. After all, there are sick people there. On the other hand, I return the favor, if I am sick with a cold and need to visit a doctor's office, I wear a mask since I don't want to spread it to anyone else. I avoid shaking hands during cold and flu season when at all possible. I avoid crowded places, which I now do anyway because of the FTD. I needed to do these things when I was dealing with chemo treatments a few years back and have just stuck with the whole rigmarole. And, yes, I get my flu shot religiously. I do not understand why anyone would not now that they do not use a live virus in the serum. But that's just me...

Last week, my husband and I visited a store, then decided to have dinner at a very popular restaurant. Sure enough, three days later, I had come down with a cold. It is almost gone and I seem to have avoided it turning into bronchitis. (Knock on wood here.) I am very happy about that and am praying that it doesn't continue to linger.

Reading posts from others dealing with FTD, I have often seen them talking about how any little illness can throw them for a loop. That made sense to me, since we tend to be weary a lot of the time and other illnesses will make you feel that way as well. Reading about it and experiencing it are two very different things.

This cold wiped me out, sapped all my energy and made me miserable. As I have mentioned many times, I have a chronic headache, similar to a migraine, constantly. When you add sinus congestion into the mix, it becomes massive. I have spent a week not wanting to do anything at all. I have not even wanted to read, the one pleasurable thing that I can still do. When I don't read, that is a huge sign that I am sick.

I know this is probably ending up to be a very boring post. I'm sure many of you are saying something like "What a wimp. So she has a cold. Big deal!"  I totally agree with you. That's how I felt all week as well. Then I spoke with a few people with different chronic illnesses and discovered that they experience the same thing. It seems when your body is constantly under attack from a chronic illness, it doesn't have many reserves left to fight something as simple as a common cold. It makes total sense and I don't know why I had not thought of it before.

When we were dining at the restaurant, low and behold, who gets seated right next to us? My ex-boss and her husband. Yes, the ex-boss who decided I could no longer work for her because of my FTD. (She was probably right, I just believe she handled the situation in a horribly nasty way.) At the restaurant, she tried to ignore me, but I am the kind of person who doesn't deal with things that way.  Kill 'em with kindness. It usually shifts that awkward feeling from me back to the one who should be feeling that way and makes me the bigger person anyway. So, on our way out, I stopped by their table and exchanged "pleasantries" with them.  Can you guess who I blame for giving me the cold?  You got it!!!


Sunday, November 8, 2015

No Need to Hide FTD

I am learning, slowly, but I am finally learning. Having FTD is nothing to be ashamed of. It is not something I brought on myself or came down with in a dirty way. After all, it is FTD, not STD.

I am finally learning that it is okay to tell people that I have it. Of course most have absolutely no idea what it is, so what I say is "Please bear with me, I have a rare form of dementia and I need your patience and tolerance."  This is usually enough, and I am reassured that it is quite alright and I am doing fine. Once in a while, I will see that dreaded look of pity, but most often, it just causes the person to slow down, to listen more closely when I am stuttering, and patiently explaining something for the third time. The interesting thing that I have noted is that young people are much less likely to understand. I am guessing it is because they are young and still feeling immortal. I refuse to believe that it is that they don't care.

Many people have referred me to the site http://www.theaftd.org/life-with-ftd/resources/awareness-cards  Here, you have access to several varieties of business card size awareness cards that you can give to someone when you are trying to deal with them. The ones for the caregivers to give to people when I am acting strangely and embarrassing them are probably a good thing. However, the ones that say "I have FTD..." would make me feel weird handing them out. If I get to the point that I cannot talk very well at all, then I will use something like these cards. While I still have a voice, I think it is better for me to just tell them.

A few weeks ago, I was in a restaurant with my husband and our daughter. This was a restaurant we have dined in a few times because it is near our daughter's home. Driving in, we noticed that something was being built in an adjoining lot. After the hostess seated us, I asked her what was being built and she told me it was to be a hotel and what brand it was.  We had a wonderful dinner, great service, great food and a great visit with our daughter. When we were leaving, the hostess wished us a good night. Then, I asked the hostess what was being built next door. When I saw the expression on her face, I thought "Uh-oh, now what did I do."  I finally said "I am guessing I already asked you this." She acknowledged that was true. So I just asked "And what did you tell me?"  She answered again about the hotel and the weird looks continued. So I apologized and explained like I said above, "I have a rare form of dementia and sometimes can't remember." I don't think I will ever forget her answer again.  It is to be a Drury Inn, that is now locked into my memory.

It used to be that I would have been horror stricken I had done something like that, but I have gotten over it and just tell them about my FTD. Of course, those times when I say something and get a flabbergasted look back and cannot remember for the life of me what I said that might have been offensive, I don't say anything at all. I guess that is where the cards for the caregiver to hand them would work well. These instances kind of "freak me out." I usually end up just looking back at them with a puzzled look, because either I don't think what I said should have been offensive or I just cannot figure out what I said at all. Occasions like this literally wear me out. I get angry at myself because I did it again, plus I feel guilty and the strain of trying to figure out just what I did is exhausting.

Sometimes, I think I should get a T-shirt that says "No, I'm not stupid... I have FTD." Then I wouldn't have to say a word, just point to my shirt.


Sunday, November 1, 2015

FTD... Freeing The Demon

Some days, I feel extremely stressed and angry. I would think this is pretty normal for anyone dealing with FTD. Some days, my almost constant FTD headache is worse than others and is definitely worse on the days that I am feeling stressed and angry. The disease just plain sucks, as I have probably said before.

I have been trying to figure out why some days are worse than others.  It is pretty easy to see how the stress and anger would go hand in hand. If I am more stressed, it would certainly be easier to become angry, even if I am just angry that I have to feel stressed that day. Of course the reverse would be true as well. I think anger probably stresses anyone, FTD or not.

I have posted many times about how those of us with FTD can only handle one thing at a time. If I am trying to read, don't interrupt me to ask a question unless absolutely necessary. If I am cooking, don't start talking to be about anything. Don't even ask me (at least not more than once) if I need any help. Don't ask me if I want you to set the table, just do it! I could go on and on with examples, but I am sure everyone gets the general idea.

What most people don't get, and I just figured it out recently, is too many questions is just the same as trying to focus on too many things. If you come to me to ask a question, once I have given you my answer, it is time to drop it! If you keep going, giving me several options of how else it could be or keep telling me why you think your way is best, I am going to snap. I guarantee it.  Once I answer a question, I am done with it. If you truly did not want my opinion, why ask me and then try to convince me otherwise.

The other factor is that I am not usually sitting around just waiting to be asked a question or given information about things that I don't care or need to know about (i.e. sports). Stop and think about it. I am fortunate enough to still be able read, which I celebrate often in these blogs. It does, however, keep getting more difficult. Some times I need to reread a page a few times to understand what I am reading, or go back a few chapters to try to remember why such and such is happening now. This can be stressful, but if I am sitting in a quiet room by myself, I can handle it and still enjoy the reading. However, if I am sitting on the sofa and someone else is watching television, it becomes a problem. I usually do pretty well at blocking out the noise of the tv, but if someone starts commenting on what is on the tv, it is an entirely different situation. Now I actually have 3 things going on... reading, blocking out the tv noise, and having to listen to conversation. Another example that pops to mind is that if I have been brave enough to face shopping and I find something I want to buy, I don't need anyone picking up something else and saying "maybe you like this one better" "or are you sure the color is right?" If I am brave enough to face a store, I want in and out quickly. Find what I want and get out. That is more important to me than dithering over which one is the most perfect. A little bit perfect is just fine.

Today, I was unloading trick or treat bags. We usually get around 20 costumed visitors, so I made up 30 identical bags. That way, I would not have to deal with kids grabbing things out of my basket or asking for a particular kind of candy they can see, because that caused a lot of stress last year. It worked perfectly! Well, it worked perfectly because we only had one kid show up. He was cute enough to make up for not having any more... the cutest little blue furry dinosaur ever!!!  Anyway, today I decided I should separate everything out of the treat bags. I was happy, sitting on the sofa, making piles of the different items from the bags.

Earlier in the day, I had asked my husband if he could redo the list of my medications that I carry in my wallet. I wanted it smaller so that it would fit better. He came back three times, interrupting my task to show the results to me. Each time, it was to show me an example of what he thought would be better. When I was not completely happy, he tried to convince me that his way was better. When I again explained what I wanted, he insisted on explaining to me why he did it his way. After the third time, I told him exactly what to do to make it the way I originally asked for it. Yes, he made the mistake of saying just one more thing. I started yelling! Was he to blame? Not really, he was only trying to make it perfect (the hazard of living with a perfectionist" for me. The problem was that he wasn't really listening to me as to exactly what I wanted... instead, he was trying to figure out what he thought I should want. All out of pure love. Was I to blame? Somewhat, I guess. I should have taken a few deep breaths before I snapped, but FTD does not allow me to do that. There is no filter between brain and mouth. What I think, I spit out. Sometimes I think FTD stands for "freeing the demon" because that darned irritable demon keeps popping out of me!

It is is difficult, even for me, as well as my loved ones, to realize that even one task that involves multiple steps is way too much for me to handle. What I was doing, sorting out the candy, should not have been a major project and wouldn't have been pre-FTD. I would have been able to be doing a couple other things at the same time, no problem. Unfortunately, it doesn't work that way anymore and is not going to go away or get better. I think my loved ones forget that. They see me having a decent day, accomplishing some things and smiling, and think that today will be different for my brain. I wish it did work that way...