Wednesday, December 30, 2015

Totally Frustrated, Again

I must write a blog entry today to release some of my frustration. This one is to hopefully explain something more fully to the caretakers who might be reading this.

I constantly say "Please, one thing at a time!" and have mentioned that concept many times in my blog entries. It seems like such a simple request, yet I keep finding that caretakers cannot grasp the meaning behind the request. Not only do I witness this in my own home, but also read about the same problem on a couple of the online support groups' postings. It shows up often on the support groups that include caregivers more so than those with FTD.

I am guessing that it is the question about just what makes up that one thing. I think when I say "one thing" it is heard that I cannot, for example, jump rope and chew gum at the same time. Forget the gum! The problem, for me anyway, is figuring out how to turn the rope and move my feet at the same time, maybe even just how to use both arms to turn the rope.

It is also answering any question while I am doing something. If I am reading the directions on a package of food, if I am asked something like "What temperature does it say?" I am totally thrown off. Yes, I usually end up lashing out at the one asking the question. Am I angry with that person? Not really, but I am so very frustrated because I have to answer "I don't know yet" or answer the question and then start at the very beginning of reading the instructions again. Repeat something like this a few times and I am ready to throw the package at the person asking the questions.

Sometimes, I do literally throw something... usually in the trash. Again, it is not because I am truly angry. It is because I have reached the level of frustration that the only option I can see is to give up. I have lost all interest in the task I was attempting and no longer care if it gets done or not.

At that point, the person who helped bring me to that point says something like, "Please stop" or "don't be like that."  Wrong response, no matter how you look at it. First, this is like reminding me that I failed and dismissing my anxiety and frustration. Secondly, I don't do it on purpose!  It is the horrid disease preventing me from doing something that should, and used to, happen spontaneously, without even thinking about it. Instead of calming me down, this type of response just adds to the frustration level to the point that I feel depressed because I am so useless and because I irritate everyone.

Come to think of it, many of the issues that I experience or witness with others, are also the result of the caretaker not being able to understand what we are experiencing. For example, if I am pacing or wandering around like I am lost (some even leave the house and roam around outside which can be quite dangerous) or sleeping during the day, it is usually because I am so bored and frustrated that I cannot do anything. Most days, my choices come down to whether I should clean the house or read or sit and do nothing. Not much of a choice. At least I am still fortunate enough to be able to clean the house and read. But these options are nothing compared to the abilities I used to have, back when I felt I was actually contributing to society. Again, just that feeling of being useless and a burden to others.

It works the other way too. I have to constantly try to stop and think about the frustrations of the caregivers. This, though, is nearly impossible with an FTD mind, but I keep on trying.


 


Sunday, December 27, 2015

Too Much Christmas

Yikes!  That is the best way to describe the past week. My blog entry last week was almost congratulating myself because I had finished the cookies and had all the preparations made in advance of the Christmas weekend. It is so easy to disillusion one's self.

It truly was awesome to have my daughter home for the entire week, but I had placed too much confidence in myself based on her being here. I could tell she felt pressured by everything I wanted her to do. She really enjoyed several visits with family and friends. What I didn't calculate into the formula was that this was her vacation. She had saved up her vacation days for this week long visit and expected to be able to relax.

I couldn't relax, though. I had my visions of how everything should be and what I should do to make it so. I tend to bury my head in the sand when it comes to admitting that FTD limits what I can and cannot do. By Christmas Eve, I had put so much pressure on myself, that I had a major breakdown. My daughter and I had driven (a 3-hour round trip) to visit some family she wanted to see while she was up here. That took a six-hour chunk of time out of all the preparations I needed to do for Christmas Eve dinner, Christmas brunch and Christmas dinner.

Don't get me wrong, I would not have given up that visit for anything. That chunk of time, however, had me working in a frenzy to get things done. My husband was napping and my daughter was tired from the trip and was also napping. I started the preparations. I made the egg casserole we always have Christmas morning because it needs to sit overnight before baking. I cleaned and de-stemmed three pounds of spinach, some for the casserole and the rest that was supposed to be for the spinach pie I was making for Christmas Eve dinner. Small tasks, such as scrubbing the potatoes for the next day, piled up and I was exhausted beyond being able to do another thing. I gave up making the spinach pie (but used the filling for Christmas dinner vegetable instead of what was going to make, so  it didn't get wasted). I cleaned up as best I could in my exhausted state, then woke my husband from his nap and told him all the prep was done for Christmas and that I didn't give a hoot (actually I used a much nastier term) what they ate for dinner, and I went to bed. Fortunately we had dined out the night before for our wedding anniversary so they had some really nice leftovers to eat.

Several hours later, when I ventured out from my room, they both asked the logical question of "Why didn't you wake us up and ask for help?" Seems rather obvious, doesn't it. But I couldn't do it. I had always done it all and expected me to do it all myself.

In addition to the Christmas Eve meltdown, I learned the hard way that the evil symptoms of FTD seem to get much, much worse when under stress. I spent much of the week not being able to swallow most foods and spent much of the week trying to speak. In addition to the stuttering I have been doing for a few months now, I would end up stammering a single syllable in the middle of a sentence until I would stop trying to speak. Once I stopped, which was often difficult, and calmed myself down, it was enough better that I could get the thought out.

All the Christmas week commotion brought out that no matter how many times I tell my family members and friends that I can only focus on one thing at a time, they just don't "get" it. Something as simple as putting cookies on a plate is one thing. If I get asked if I want them to serve drinks, is another. Even when I would start stammering and stuttering, they didn't understand. One thing is a simple task, one step in a task or even trying to formulate an answer to a simple question is my one thing. It is not the time to ask me anything or suggest anything. I end up not being able to do either thing, my brain becomes a big tangle of thoughts and nothing at all makes sense

I did wise up a little bit. When Christmas dinner was done, I got up from the table and went into another room. They got the hint and all the clean up was done.

Bottom line, lesson learned. From now on, no holiday dinners or celebrations will be hosted by me. Please, someone remind me of that when Easter gets here!

One side note. My daughter brought her two cats along for the week. Once they got used to me and would snuggle with me, I realized how comforting a pet can be to someone with FTD. I think it would be important that someone else was willing and able to care for the pet, but the comfort of a pet could be a true gift. Of course, it seems selfish to ask your caretaker, who is already stretched too thin, to take on another onerous task!

Today, everyone has left and left a huge void. Even with all the crappy stuff, it was a wonderful holiday!

Friday, December 18, 2015

Trying for the Perfect Holiday

So, here it is, one week until Christmas, just seven days to go. Christmas has been my favorite holiday ever since I left my childhood home. I would often spend two months getting ready for it to make it special for our family.  Somehow, it would all come together with ease.

This year though, I struggled with baking cookies. Many people clamor for my cookies come Christmas time, and I have always tried to make everyone happy and made as many favorites as possible. I cut back this year, only baked 68 dozen and eliminated a couple of the really labor intensive ones. I just couldn't get into the groove of it this year. Used to be, I had a system going and cranked them out, enjoying myself the whole time. This year, it took twice as long, I made at least three times the mess.

The cookie baking during this Christmas season has been just too much stress and, yes, I do know I put it on myself.  The cookie baking is very time consuming but I crank up the Christmas tunes and get into it. I enjoy the smiles on peoples faces when I deliver their cookies to them. I have learned, though, that the enjoyment is diminished by the exhaustion I am feeling. But the cookies are all in the freezer waiting to be put out onto trays. I delivered one tray yesterday and the rest of them will be delivered this coming week.

I did manage to do almost all the Christmas shopping online which helped a lot, but if I bought any of the wrong things, it is going to make it more inconvenient to return or exchange. I think it was a wise choice, even with that risk.

The best news in a long time: I am so very excited because my daughter and my grand"kitties" arrive tomorrow. They haven't been here for two years and they will be here for an entire 7 days, not even counting her travel days! That means lots of friends and family to visit. I have attempted to keep the schedule down to one event a day to help me stay calm. However, I have had to double up on a couple days. I know my daughter will be a big help at keeping me calm, she always has. She just seems to have an instinctual knowledge of when I need to get away for excitement or confusion, like loud noise or lots of people talking at the same time. She will protect me. Sitting here thinking about it, however, has me feeling quite anxious.

I have menus planned for most of the days so now I know I must make up a grocery list so I have everything on hand that I will need. I am determined to keep Christmas dinner simple, standing rib roast, twice baked potatoes, cauliflower casserole and rolls. That's it! Anyone wants something else, they are free to make it and bring it with them. Christmas brunch in the morning is another tradition with us, but Kris will help me with that. Plus, the mimosas we always have with brunch should help keep me at ease. As long as I don't have so many that I can't do the dinner!

All those issues aside, I am still sitting her feeling anxious. I read an article in a magazine today and from that, I kind of figured out what my problem is.  I am so afraid that this will be either my last Christmas or at least the last one I can do for the family, Because of this fear, I want everything to be perfect for everyone, for my daughter, my husband, my sister and, yes, for myself. I feel like if I mess up the scheduled events and visits, I will ruin it for everyone. I feel like if the Christmas dinner isn't perfect, I will ruin it that way.

When I slip and say something to a family member, they say that they will do this or that. I cannot accept that though. In my mind, if I don't do it, it won't be perfect. If this is to be my last Christmas, or the last one I am capable of putting together, it MUST be perfect.

It will be perfect enough, I am sure.  Let me take the time to wish you a very Merry Christmas and for my Jewish friends, I hope you had a wonderful Hanukah

Sunday, December 6, 2015

Dealing with Mental Issues

I am so very thankful that I have a psychologist who helps me. Not only is she a psychologist, but she is one who specializes in dementia patients. No, I do  not think that FTD is a mental health problem, but dealing with FTD can become a mental health issue.

I first sought out my psychologist when I was at an ultimate low and felt like I was at a breaking point. This was triggered by the frustration of being told by a prominent Alzheimer's research program that there was nothing wrong with me, not even MCI (Mild Cognitive Impairment). This was especially frustrating because one of their co-directors is the Neuro-Psychiatrist who first provided my diagnosis and had it confirmed by two SPECT scans, a year apart from each other.
I, of course, knew there was something wrong with my brain and was panicking that I would lose my Social Security Disability. It is only $800 per month and didn't come close to what I was making while I was working, but was certainly a big help to the budget.

I started calling around, especially to the largest psychiatric center in the area and they had no one who was familiar with FTD. They later, after I had also found her name, called me back with Dr. Spayd's phone number and recommended I call her. I was very fortunate that she did not have a waiting list at that time and got in to see her within two weeks. Good psychologists in this area are in high demand. I am now down to seeing her just once a month  or more often if I have a crisis. Oh, and the report from the research center was incorrect.

I probably wrote about this in my blog when I first started it. What prompted me to write about this subject today, was a mini crisis. I immediately pulled out my calendar to make sure I was seeing her this week and I am scheduled for Wednesday. I think I can make it for three days.

It boggles my mind sometimes how I can be going along just fine, coping with everything that FTD throws in my face, then wham-o, something knocks me down. It is usually just something that seems so little and inconsequential, but when it gets piled on to everything else that someone with FTD deals with everyday, it becomes a crisis.

This is, of course, the holiday season which puts stress and strain on most everyone. As I wrote about last week, I thought I had everyone laid out in a way to limit the stress. I was setting smaller goals for each day to not only keep me from getting worn out physically, but mentally as well.

Today I had scheduled (well actually it was yesterday, but wasn't up to it and moved it to today) to wrap all the gifts. I have always disliked using gift bags for Christmas gifts, it just seemed to me that it made it look like I wasn't willing to make the effort to wrap the gifts. Plus wrapped ones look so pretty under the tree. I had finally convinced myself to at least use the bags for most gifts. When I mentioned to my daughter that most would be in bags, but everyone would have at least one or two wrapped ones. She, wise woman that she is, said "Why do you have to wrap any? Bags are fine!" So today, I spent about 2 1/2 hours working at it, and everything was packaged up looking pretty darned good, if I must say. I was feeling really good about it and about myself for accepting that I didn't have to do it all!

Then my husband comes up to me and asks if I didn't leave any paper and bows out for him. I explained, once again, that I was using gift bags and I did leave some out for him. He was adamant that he much preferred wrapping paper and bows because he was used to things being wrapped that way and thought it looked better.  Gee, I wonder why I overreacted to that? Of course what I heard was that I was unable or too lazy to do things the "right" way. I doubt that he meant it like that at all, but, after feeling so good that the task was done and proud of myself for accepting the alternate way of doing it to make it easier, I sat for an hour with tears in my eyes, feeling like I was, once again, letting my family down.

I know the psychologist is going to tell me that this is his issue, not mine and that I am wise to cut back on the efforts needed for Christmas. I don't want to be exhausted once the holiday gets here. My remaining task is to start baking and freezing cookies. I make between 50 and 100 dozens of cookies each year to share with family and friends. Everyone looks forward to them and I view it as a gift of love. It does take a lot of effort, especially with FTD, which makes it difficult for me to follow a recipe, even ones that are very familiar to me. That is why I have done everything else early this year, so I would have the energy and time to do my baking.

I know that is what she is going to tell me, but I really need to hear it. That was why I was so relieved that I had an appointment in three days. I think, just maybe, I can keep from screaming at my husband and breaking down until then! I am so thankful that I found my psychologist and that her office is right here in our tiny little town. I don't think I would make it through this FTD battle without her. I think seeing a psychologist, especially one familiar with FTD, would benefit the one with FTD, as well as the caregivers. I don't think they should both see the same one though,