Christmas is Coming!!!

This week has been stressful as we get closer and closer to Christmas. We are travelling to our daughter's home this year, so planning and stress has increased. I've made lots of lists which certainly help. The biggest thing that helps is the realization that it doesn't matter if I forget anything or don't get something done. The only thing that matters is that I get to see our daughter for Christmas! The gifts are wrapped, the baking is done and cookie trays have been delivered or mailed. I cut back on the number of cookies baked and gifts bought to reduce the stress and it doesn't matter because those aren't the important things. Though some who love my cookies may disagree.

Today is Sunday, but we still had to run some errands. We needed to get what I need for Christmas dinner and also sent a list to my daughter of what I need her to have on hand. I have kept our Christmas dinner simple and she will help me cook, so no worries there. We went to the state liquor store to get some bubbly for Christmas morning mimosas and some wine for with the dinner (okay, I'll admit it, I had to call my daughter and ask her "what is that wine I like?") then went to my favorite Hallmark store. They called a couple days ago to invite me to their "secret sale."  They started this a couple years ago. They call their "top customers" and invite them in, with a code word, so we can get the day after Christmas bargains ahead of time. Since there is no way I would venture out the day after, just like I avoid Black Friday, I love this opportunity.

I just love this Hallmark store. It's not the biggest of ones of all that I have frequented in the various places I have lived across the country, but it is definitely the friendliest. The same pleasant, lovely ladies have worked there forever, or at least for the 10+ years we have lived here now. They almost always remember my name, maybe only the first or the last, but they always seem happy to see me and I am just as happy to see them. Today, though, I made a total fool of myself. My FTD kicked in big time and got me totally confused and befuddled, enough so that it was plainly obvious. The loveliest lady of all was helping me and was as sweet and helpful as always, very patient and understanding. When I still couldn't remember what the ornament was that I still wanted, she said to just call her when I remember and she will set one back for me. See what I mean? Wonderful store, wonderful service! Unfortunately, just as I was turning away from her, I saw "the look."  What look, you say? The look of sympathy, the look of "that poor woman, what a shame," the look of pity... that look!

The look comes from love and caring, but it totally defeats me sometimes. I don't want to be the person who is pitied. I am so very proud of all that I can still do and still have my pride, maybe too much, but I definitely have it... until I see the look. I don't know how to explain to you how to not show it. It is pretty difficult when you see someone you care about being defeated by FTD, or any other dementia, to not feel sympathy or pity to some extent. Perhaps my advice would be to just hold it in a few more seconds until you know they can't see it in your eyes.

Above all else this week, I wish you all a very blessed and Merry Christmas. May it be filled with love and comfort and even throw in a big bunch of fun!

Happy Holidays

I titled this post "Happy Holidays." No, this doesn't mean I am being politically correct and not saying Merry Christmas.  FTD'ers are not very often politically correct since we have no filter between brain and mouth.  For instance, I now have a horrible potty mouth and say things I would never have even thought, much less said out loud.  It is sometimes quite scary and makes it very easy to offend others.

What I want to talk about is literally keeping the holidays happy. I was lucky with Thanksgiving. We keep Thanksgiving simple, usually with a limited group of family, or maybe a friend or two thrown in. I don't remember ever having more than 10 for Thanksgiving. This year, it was just three of us and I prepared as much of the meal ahead of time as I could and then at the last minute when I needed help, I asked for it.  I also screamed out for them to shut  up, that I needed calm.  Fortunately, they love me enough they understood.

I have always ensured that my Christmas shopping was done by Thanksgiving. I started doing this when we moved to Philadelphia a bunch of years ago and I discovered that the phrase "City of Brotherly Love" meant nothing among Christmas shoppers! So that part was okay again this year. I am well known within our circle of family and friends as a baker. I love to do it and was always pretty good at it. I used to say I was internationally acclaimed as a baker, but that was only because two friends had moved to foreign countries... one to Canada and one to Brazil, but  one is already back and the other is moving back on Christmas day.

I have discovered that baking is no longer second nature to me. Some of my cookies are more complicated than others, others easy but time-consuming, and the rest pretty darned easy. Uh, not so much anymore. The complicated cookies that used to take an entire day to make, this year took me three days... one to make the dough, one to make the cookie and one to fill the cookies. Needless to say, I'm pretty far behind this year. I used to spent 3-4 days doing all my baking, but have already put in a full eight days and still have five more kinds to go. This may have to be the last year I make them all, and this is a very sad realization for me. But to have any hope of having a happy holiday season, I must simplify things.

All the presents I bought before Thanksgiving? Not a one of them is wrapped yet. My husband addressed the Christmas cards, but I still have to write the notes and sign the cards. Notes will definitely be just a few words since my handwriting is now horrid and gets illegible after a while thanks to my FTD. I can't bring myself to put the gifts in gift bags to make it easier, but I'm guessing I will have to do that next year.

So, if you have a loved one suffering from an FTD, here's some ideas to help.  Offer assistance. Offer to wrap packages. Offer to help put up decorations. Offer to help with baking. I, personally, can't bring myself to let anyone help with my baking, but have learned to let my husband do the cleaning up afterward and I do make a mess! I do sometimes accept his offer to help me put all the ingredients in the bowl so I don't lose count or leave something out. Offer to bring a meal a couple times in the couple weeks leading up to Christmas. I find that after doing a Christmas related task, be it decorating, baking or anything else, when it comes to dinner time, I'm at the point that one more decision or one more task is too much. Yesterday, after baking, I literally curled up in a ball on my bed and hid for a couple hours. When I was able to come back out, my wonderful husband volunteered to go pick up some dinner. I have help addressing cards, but others may not and that would be a big help.

Most of all? Help keep things as calm and quiet as possible. If they reject your help, try to stay out of their way so you don't add to the confusion.  And, when like I did today, they leave a vital ingredient out of a recipe (In today's case, omitting a entire pound of powdered sugar makes your cookie filling pretty darned bland.), laugh with them and help them fix it. In this case, adding the sugar at the end of the process changed the consistency quite a bit, but it still tastes as good.

The ultimate help?  Keep things simple!!!  And... for the FTD sufferers reading this, don't be as stubborn as I am. There is nothing shameful about having to ask for and accepting help and cutting back on some of the traditions. Keep it happy!

FTD Info, Safety Aids, and a Huge Thank You!

First off today, an update to last week's post: I found the source of the list of differences between FTD and Alzheimer's that I included. It is from the Association for Frontotemporal Degeneration and can be viewed at
http://www.theaftd.org/understandingftd/ftd-overview
Lots of good additional information there, definitely worth checking out by caregivers, sufferers, loved ones and just anyone interested in knowing more.  

I have another practical suggestion and recommendation.  I have mentioned on previous posts that I have developed weakness in my right leg. It seems like the signal does not go between brain and leg. Because of this, I have been tripping a lot and falling as well. I don't know if I mentioned it before, but one of the first things we did was re-install the door leading to the finished basement rooms. This was in case I again fell in the upstairs hallway. If there was no doorway, I think we would have put up a gate of some sort, but would have never called it a baby gate. That would have been too humiliating, but I digress here.

The next step we decided we need to take was to remove unnecessary throw rugs and to adhere the other rugs to the floor. I remembered hearing about "Ruggies" on infomercials. I was hugely skeptical, because the claims made in infomercials are in the category of "if it sounds too good to be true, it probably isn't true" category. But I thought, what the heck, why not try them since I couldn't come up with a better solution. I bought mine on ebay, because I am reluctant to trust those "call now" numbers and give my credit card info. I am pretty sure, though, that they can also be bought in stores that have an "as seen on tv" department. I know CVS has a section of this stuff, as well as our local department store, Boscov's. I imagine a lot of other stores do as well, but, again, I am digressing.

These things really work! It took me a while to figure them out because I was stubborn enough that I had to do it and couldn't ask my husband to help. I forgot that I should read the directions. Oh no! I must be turning into a man! Sorry, guys, I know it's my FTD and that men just can't help not asking for directions! After reading the directions, it was pretty easy. The part I was missing was the statement of "if the Ruggies will not stick to your rug, first attach one of the pieces of adhesive in the other packet directly on to your rug, then add the Ruggie. I now have the corners of our doormat, hall runner and area rug being held down without damaging either the rug or the floor. I love success!

I posted about this on the FTD patient support group that is my lifesaver and another member made an additional suggestion of a non-skid bathmat outside the tub. I should have thought about that already, but hadn't and I use terrycloth bathmats and have already slipped on the floor with one. I am lucky that our shower has strong grab bars (another suggestion if you don't have them) and one is right there by the entrance to the tub, so I am usually hanging on to that when stepping out. A nonskid bathmat is next on my to-do list. It will frustrate me though, because the newer washing machines tell you to never, ever, wash them in the washer and I cannot imagine not being able to launder a bathmat. If I find a solution to this one, I will be sure to post about it. 

That's about all I have to drone on about this week. Except for telling you how wonderful my husband is to me. He even went to the grocery store by himself today because I knew it was not a good day for me to try to deal with it. There is a second private Facebook support group I go to, this one for caregivers and sufferers both, and when I see the posts of some of the caregivers and their anger toward their loved one and them even ridiculing their loved one, I realize how great he is and how patient, forgiving and loving he is to me. How horrible the lives of those sufferers of FTD must be in that environment. Thanks, Mike, I love you! 

Please Excuse My Whining

Ahhh... another week, another frustration of someone I care about not believing there is anything wrong with me. I cannot begin to explain how great this frustration is. Here I am, trapped in this brain that just won't cooperate with me, but because not everyone can see the symptoms, the disease doesn't exist.
I stumbled across a list of differences between Fronto Temporal Dementia and Alzheimer's Disease that might help others understand just a tad better. I wish I knew the source of  the excerpt because I suspect there might be more beneficial information there, so I will keep looking.  In the meantime:

Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.

FTD vs. Alzheimer’s Disease

 *Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:

 *FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer’s disease is loss of memory.

 *FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.

  *FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but may retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time). AD patients display increasing memory deficits, but typically retain socially appropriate behavior.

 *Some FTD patients may have only language dysfunction (this is seen in the two types of progressive aphasia: semantic dementia and progressive non-fluent aphasia). And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object. The language decline seen in AD patients involves a milder problem with recalling names and words.

 *FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor (similar to Parkinson disease), or muscle atrophy and weakness.

I will add a little more information to go with this. FTD does not present itself the same in each case. Most will have a combination of the symptoms listed or sometimes just one. Bear in mind, the list above does not cover all the possible symptoms, it is just pointing out some differences between the two diseases. 

For instance, at the risk of repeating information from previous posts, I was definitely in the average age span when first diagnosed. I definitely fall into the category of behavioral and personality changes. (One item not included in the above list in this category, is apathy or a flatness of emotions, feeling no empathy for others... totally a change from the person's previous personality.) I do struggle with speaking, more so when stressed or uncomfortable. I will struggle for the correct words, my speech pattern is slower and I stutter, which before was never an issue with me. I have difficulty operating things such as the microwave, stove and washing machine. A few months ago, I started having some motoring issues. My right leg just doesn't seem to get the messages from my brain and often drags when I am walking. I  have mentioned before that I have started falling more frequently and am beginning to have problems clearing my throat and sometimes with swallowing. Not to forget my first symptoms of constantly getting lost, even in familiar places, and the lack of impulse control. 

As I have said a few times before, I am still blessed with the ability to read and, obviously can still write. Writing is much easier than speaking, because if I can't think of the words, I can sit here until I do or try to come up with alternatives. I also have the opportunity to edit and there sure is not editing or filtering on what comes out of my mouth! 

All of this explains why people have trouble believing I have FTD. For starters, they love me and don't want me to have anything wrong with me or my brain. Secondly, most of them don't see me often and some see me rarely and our only communication is by phone and/or internet. It's pretty difficult to pick up on the symptoms that way. Well, except for the personality changes and the lack of a verbal filter on my mouth. These are people with whom I am most comfortable, so the speaking problems are at a very minimum when talking with them. In addition, most of them have have previously dealt with someone suffering from Alzheimer's Disease, and have trouble realizing the differences. So I do understand why they have trouble accepting or believing that there is something wrong with my brain. I suppose I should feel grateful that not everyone realizes how uncooperative my brain is, but the struggle continues. My frustration lies in that they don't recognize what I go through just to make it through the day and don't understand why I no longer paint or no longer volunteer the way I used to or why I am no longer active in my church. It hurts that they are perhaps thinking I have just become lazy and don't care anymore.

Well, I apologize for the length of this post and for the whining. Hopefully, despite that, my frustrations will open some eyes to the differences between the types of dementia and let the other sufferers know they aren't alone.

Support Groups

I am learning just how important support groups are to those with FTD. This disease is so very much misunderstood. Even a lot of member in the medical community have no clue about what it is or what its effects are. All the neuro-psychological testing seems to be geared to Alzheimer's disease. The online support group that I have found is exclusively for those with a confirmed diagnosis of an FTD, I have learned more about my disease on this Facebook page than I have anywhere else.

I have learned that the headache that I can never get rid of is common among those with FTD, as well as sleep difficulties, balance issues and falling. I am somehow happy to know that I am not as bad as some with my anger issues and the immediate lashing out in anger. I have had trouble for the past year with not being able to clear my throat, and have been driving my loved ones crazy with the constant noises that I make trying to do so. I never even suspected it was part of FTD until I read about another sufferer who was experiencing even more trouble with clearing his throat, to the point of choking sometimes. It is relieving to know that I am not the only one who is driven crazy by noise and who is more sensitive to smells. The information is just not out there anywhere else that I have found!

I wish I lived in an area large enough to have more people with diagnosed FTD, only so that we could have a face-to-face support group. Of course, with the extreme difficulty I had getting a diagnosis locally, who knows how many are nearby who are being treated, incorrectly, for depression or bipolar depression and who knows what else, when they really have an FTD. I was one of the lucky ones who was able to get a diagnosis after travelling only 100 miles. Many have had to travel further. It is pathetic, in my opinion, that the local medical community is blind to FTD. I am so thankful that my family doctor kept encouraging me to seek a diagnosis. She knew me well enough to know the crap the local neurologists were spouting, how it was just depression with an amnesic factor, was not correct.

While having wonderful loved ones, who try their best to understand what I am living with, there is no way for them to truly understand. That is why I find it so very helpful and reassuring to be able to communicate with others who are dealing with the same disease. As I keep saying, Fronto-temporal Lobe Dementia is a whole different animal from Alzheimer's dementia. They are definitely relatives, but FTD is still the black sheep in the family.

I am also so very lucky to have found a private psychologist who specializes in treating those with dementia and who knows that FTD exists. She readily admits she doesn't know as much as she would like to about FTD, and appreciates the information I share with her. Despite knowing more about the more common dementias, such as Alzheimer's, she is knowledgeable enough to be able to recognize the differences and to come up with helpful ways for me to better deal with it. She has been such a huge help to me. I have cut back to seeing her just once every four weeks, which  is a good sign, I think. One of the best things she has me doing is breaking things down into smaller tasks and dealing with only one small task at a time. For instance, if I want to bake something, I focus on getting all the ingredients and equipment organized first. If that's all I can handle in one day, I leave it and do the actual baking the next day. I am also trying to keep my schedule less busy so that I can cope with a little more ease. By having smaller goals, I feel like a failure less often which is so important to keeping my spirits up.

I already have Thanksgiving broken down into small steps so that I am anticipating a successful family dinner. Then, who knows, maybe I will actually be able to do Christmas!  Wish me luck!

This Disease Sucks!

This disease sucks! I don't know how to say it better than that.

My biggest medical fear has always been having a stroke. Cancer I dealt with. A heart attack would be bad, but most times allows for recovery. Having a stroke, and having my mind still be alert and active, but my body not able to cooperate? That has always frightened me. I remember, very well, a day, when my daughter was three years old. We were visiting the home of an older couple and the husband had suffered a pretty severe stroke. This man was brilliant. He was an architect and some of the buildings he designed were pretty amazing, in my opinion anyway. It was so sad to me that here he was trapped, unable to communicate well with even his wife. My daughter blew me away that day. She sat and interacted with this man for over an hour while we worked with his wife. When we were finally ready to leave and found her still with him, we realized that she was truly communicating with him. I finally understood it was because she was still in the mode of listening and learning, with no preconceived ideas of how things should be. She learned in that short period of time to adjust her thinking and listening to understand him. You cannot imagine how happy he was that day.

I tell you this story, not only because of how proud I was of my daughter that day, but because that fear I had of having a stroke doesn't compare to what an FTD patient experiences. Some days, we can not even figure out ourselves what our brain is telling us, so how do we explain it to others? People see us looking, physically, as we always have. We are even often able to communicate to the point that others refuse to believe there is anything wrong with us. I cannot seem to be able to explain what I am going through to those that are around me all the time and used to know me better than I know myself.

How can I explain to anyone else how my brain is working when I cannot understand it myself? I have been having a rough time the past three days. Today, I was proud of myself that I was even able to get out of bed this morning. I was feeling that incapable of coping with things that it seemed like a true accomplishment. I have written previously about how difficult the grocery store is for me to deal with and this is the day of the week that my husband prefers to do the shopping. It is an old habit from the days when I was still working and he was retired. Sunday just happened to be the most convenient time to do it, and in his mind, it still is. He records all the sports he wants to watch, we do the shopping then when we come home, he makes some snacks and sits down and watches all the sports. Usually he is ready to go about the time I have finished the Sunday paper. When I haven't, he doesn't complain, he just paces about and gets involved in all kinds of little busy tasks and makes it apparent how anxious he is to get going. I would bet that if asked, he would not recognize that he does this.

My getting ready to go, which used to be so simple and automatic, is now broken down into tiny processes, each requiring my full concentration. I must make sure I am dressed and groomed appropriately. I must sit down with the store's flyer and my stack of coupons, think of what we are short of and come up with a list. Shopping without a complete and detailed list is out of the question. I won't even get into the stress of the actual shopping. I have talked about that often enough now. I'll bet by now you are thinking "Wow, is she ever getting picky and complaining over nothing."

I don't know how to explain to you, and those in my life, how my brain works when I don't understand it myself. (I keep repeating that, don't I?) That's why I think of this little three-year-old understanding this older stroke victim. How do you get past people's preconceived notions enough that they can understand? Sometimes, I seem to be able to explain it with individual episodes and they realize why I reacted in a certain way (usually by lashing out), but they can't seem to "get it" all the time, before it gets to be too much for me to handle and I do lash out or break down.

My husband? Even though he cannot understand, he did eventually realize I couldn't handle shopping today and offered to go alone, and did a good job of it. God bless him for sticking with me!

The only people I have found who truly understand are the other unlucky FTD sufferers on my favorite online support group. They totally get it, because they are also living it. Guess what? They don't seem to be able to get anyone else to understand either. So, at least I am not alone. Maybe I should find some three year old children who can translate for me.

Dealing with Setbacks

It's time to admit to a couple setbacks. I have been struggling with loss of balance and problems with staggering for about nine months now. I was shocked to  learn in the spring that this was probably due to my Fronto Temporal Lobe Dementia. I was learning to cope with it pretty well by using a walking stick while walking outside because our yard is on a hill and bumpy in places, by holding on to my husband or my sister's arm when walking in parking lots and leaning on a cart in stores that have them.

But this past week, I fell in the bedroom hallway. Problem with this is that there is an open stairway to the basement at the end of the hall. When we moved into this house, we removed the door to the basement to make it more open since it is a nice finished room down there.  I was very, very lucky when I fell. I was heading toward the stairway and would have gone down, but I twisted myself hard enough and in time so that I fell into the doorway of one of the bedrooms instead. I needed to go to the chiropractor for the twisted back, but going down the stairs would most likely have been much worse.

Now we have the door back at the top the stairway to the basement which will, hopefully, prevent falls down the stairs. I actually found out that falls down stairs, and the injuries caused by these falls, is one of the leading causes of death for FTD patients. It is inconvenient and not as pleasantly appealing to have the door there, but definitely gives me a greater sense of security.

Going right along with the falling issue, the stumbling when walking is getting noticeably worse as well.  I'm sure there are a lot of people who, when they see me out and about, assume I have been drinking. When the stumbling first started with me, I actually heard people behind me comment to that effect, sounding quite disgusted with me, and blew on by me on the sidewalk. Perhaps I should wear a t-shirt with a sign on the back "I'm not drunk, my brain just doesn't work." Well, maybe not...

I have been noticing a new element to the leg problem. It seems to me that the signal is not getting from my brain to my leg, if that makes any sense at all. I have noticed it a few times when climbing stairs. My right leg just doesn't get the idea what it is supposed to be doing. It has been of some help when I kind of push down on my thigh muscle to remind it to push in order to get up the step. A couple days ago, I had it act similarly when I was walking through a store with my sister. The right leg was forgetting to move itself forward. I had to totally focus on my walking, telling my leg to move forward and, again, pushing a little on the thigh muscle to remind it. Now I'll bet I didn't look stupid at all walking like that! At least it worked and I was able to walk out of the store.

Again this week, I am so thankful to be part of the online support group for FTD patients. When these new symptoms develop, I can quickly learn that I am not alone in experiencing them. I can also pick up some helpful tips on how to deal with the problems. We are quite a tight little community and are very supportive of each other. It is a shame that we are spread so far and wide and can't easily get together. I'll bet we could  help each other out a lot and have some good times together.

Keeping It On the Sunny Side

I really work at trying to see the good most situations. I try to stay focused on the positive side, even in this blog. I figure that even if I am feeling down, it doesn't help if I bring everyone around me down as well. Sometimes this just does not work. It becomes a bad idea because no one knows how frustrated I've been for hours and they inadvertently add on one more stressful situation and it is the one that breaks me and I lash out at them. That is what happened one day this week.

I usually sleep later in the morning than my husband does. I experience a lot of nightmares, so it takes me longer to feel rested. One morning, he had to wake me early. We were needing some trees trimmed, especially around our power lines, and a gentleman who had done some work for us in previous years stopped by and offered to do it right then. The price was quite reasonable. If I had been fully awake, this would have been an easy conversation and an easy choice. My hesitation at giving an answer made him think I needed more information, so he kept giving me more and more. I finally snapped at him to just go ahead and do it. As the job went on, yet more decisions were necessary, building up my stress.

In the midst of the job, my sister stopped by for a visit. That was a good thing as I love her to visit so we sat down to talk over a cup of coffee, switching my focus to our conversation. After that, every question about the work required me to switch focus and resulted in my brain spinning in circles, upping my frustration level even more. I did try to keep myself calm, but I am sure that both my husband and sister could tell I was getting stressed but, hopefully, the guy doing the work didn't.

After everyone left, I began to tackle a chore I had assigned myself for that day. (Have I mentioned how many Post-It notes I use?)  Like any chore, it ended up being a bit more involved than expected, but I kept at it and was doing well. Then, my husband, who was feeling relieved by having the tree trimming done, was eager to get some other neglected chores done. He interupted and offered to help me with one but I said I wasn't ready to it. After a few minutes, he suggested another one. I totally lost it! It was just too many things to think about and too many necessary changes of focus, and I couldn't deal with it. He walked away from the situation to go calm down so he didn't also react in anger... God bless him!  I curled up on the floor and cried. Fortunately, I didn't take too long to calm myself this time. I went to where he was sitting and explained exactly how my meltdown had developed from the time I was awakened. It helps us both when we walk through it like that.

It is not easy for others to realize how difficult it is for someone with FTD to change focus, even over the little things. It ended up being a good moment of education for both of us, we ended up doing one of the chores he had suggested and the rest of the day was great! So there, I did find something good about it after all!

A Few Good Things...

Something wonderful happened this past week.  I received an invitation to join an online support group for patients who have a confirmed diagnosis of FTD... no caregivers, no Alzheimer's patients. Not that we don't like either of these groups. We would have a much more difficult life with no caregivers and we certainly understand that Alzheimer's patients have a lot to deal with as well, but it is not the same as FTD. Unfortunately, many support groups, research programs and information get lumped together as Alzheimer's and other dementias. Great for Alzheimer's, not so great for us "others."

The support group is great in that it is a closed and "secret" group. No one who is not a member of the group can see any of the posts. That makes it a comfortable and safe place to talk. It has been eye opening to me.  I have discovered that some of my nagging little problems are actually part of the disease.  I have discovered that there are many others who experience the same social issues. Can you imagine what a relief this is? Maybe not, but there is something wonderful about not being "the only one" experiencing things. I don't feel so alone in it now.

Another good thing that happened this week is that there is news that the Mayo Clinic has been given $6 million dollars to research FTD's. Just FTD's, not Alzheimer's and FTD's.  I imagine that amount of money won't go very far into research, but it is a good positive step. More education about FTD's has got to get out there. I often wonder how many more patients there are that do not get diagnosed because even doctors don't know enough about the diseases. It's pretty frustrating when you have to take a publication on the subject with you when you go to a new doctor to educate on the subject. It seems to me that they should already know and be able to teach the patients about it, instead of the other way around.

I also, just this week, came to realize just how much I appreciate my sister. Not that I didn't before, it's just different now. She is always there and ready to help me out. Often times, it's just getting me out of the house and enable me to do some of the things my husband has no interest in doing. Even if it is just shopping or going out for lunch. I can also talk to her and tell her "This is not helping me!" I am so very thankful that she moved back to this area a year and a half ago. She makes a big difference in my life. I actually called her and told her this a few days ago.  Yes, a few tears were shed... happy tears!

All was not sunny and bright this week, but I got through it all.  A little frustration here, a lot of frustration there, and while it does seem to be taking me longer to recover from stressful and frustrating events, I still can and that IS good.

Rough Week, But Getting Better

I probably should not write a blog entry this week, it has been a rough one for me.  Nearly every day, I receive email and Facebook notices from a few different dementia and Alzheimer's support groups and research organizations.  One that I received this past week really peaked my interest.  It was recommending a book While I Still Can by Rick Phelps.  It sounded interesting, so I downloaded it onto my Nook.  Wow!  I will refrain from really recommending it myself because of how it caused a downward spiral into depression for me.  However, it would be an excellent book for anyone who is acting as a caregiver or who has a loved one suffering from Alzheimer's or other dementia. It gives you a good look at how it affects the patient and offers some helpful advice for caregivers.

In this book, Mr. Phelps, after much frustration, was finally diagnosed with Early Onset Alzheimer's Disease and was still in the earlier stages when he wrote the book.  I truly found myself envying him in some chapters, mostly because he could still drive and do a few other things I am no longer capable of doing.  In other chapters, I was thinking how fortunate I am that FTD has not yet robbed me of other abilities, mostly the ability to still read and to enjoy it.

In the chapter where he was talking about not being able to read more than a paragraph at a time, I started thinking. I still love to read and don't seem to have a lot of difficulty focusing on a book. I read an entire book nearly every day.  I will admit, however, that I keep my book selections to lighter reading than I have in the past, nothing that will stimulate fear, frustration or deep thinking.  In contrast to that, I can no longer enjoy watching a movie.  I can handle an hour-long television show most days, but find I need to keep my hands busy doing something to keep me from getting restless. Anything longer than that, I cannot focus on or follow the story. I also can only handle one or two shows in a day. Yet, I can sit for three or four hours and read. I am extremely thankful for that.

While I Still Can helped me realize that I am not alone in a lot of other symptoms as well.  He points out that some days, just the sound of a spoon dropped onto the floor is magnified to a hugely irritating level.  Some days, when my husband unloads the dishwasher (Yes, I am so very lucky, he does laundry too!) I find myself clawing at my own skin and tugging on my hair, it is just that irritating to my system. Fortunately, I don't do it to a level that I actually hurt myself.. Also up there is an intense fear of crowds, due to the noise and hubbub of activity. Blinking lights are horrid, leading quickly to what I call "sensory overload."  I could not understand why I have become so uncomfortable in other people's homes. Now I realize it is because in my home, I know where everything is... the rooms, the furniture and anything I might need. When out in public, I find myself avoiding eye contact with others in the fear that I might have to make conversation with them.  The grocery store is now my enemy... carts going every which way, background music, screaming children, fear of seeing people I know and trying to keep track of my list and what I need to get. Again, I am very fortunate to not have to try to shop alone.

A quote included in the book summed up how I feel often times:  "I used to have a handle on life... but then it fell off."   I sure lost that handle this week, but with patient help from my family, I feel like the handle is back in my hand.  Plus I know I get to see my therapist this week.  We are planning on talking about cutting down my appointments from every two weeks to once a month. I cannot tell you enough how much of a lifesaver she has been. I strongly recommend finding a therapist who specializes in working with dementia. It takes someone who understands dementia to realize that my depression is a result of the dementia, not the cause of it!

Be Honest and Share What You Are Feeling

A good friend of mine posted two of those cute little posters on Facebook today:

"Relationship Rules: There is no feeling more rewarding than the one that comes from being honest. Be honest, both without yourself and your partner.  Life will be so much simpler."

"Do you ever get that feeling where you don't want to talk to anyone, you don't want to smile and you don't want to fake being happy, but, at the same time, you don't know what's wrong?"

Both statements hit me hard, because it reminded me about what my therapist has been helping me work through. Take the first statement and substitute the word caregiver. I tend to cover up when I can't think of the right word, can't figure something out or just feel confused. I also remember the family members I have helped care for who suffered from Alzheimer's Disease doing the exact same thing.  We get pretty good at it too! This practice actually makes some sense when out in public or in a social setting, but I need to remember to be honest with my caregivers. When I don't, that is when conflict begins. For example, if I am trying to put something away and can't remember where it belongs, my husband or sister will ask "don't you remember where that goes?" or something along those lines. I don't want to admit that I can't, so instead, I find myself snapping at them, something like "Of course I know where it goes, I was looking for something else." Then I put it away wherever I can.  This is not helpful to either of us, not to mention difficult to find things later. I should admit that I don't, and let them tell me where it belongs. I have to realize that they are not being critical, they are trying to help.  This is a simplified example, but still brings the message across.  It is much better to be honest with myself (and accept) my weaknesses. Then, together, we can figure out ways to deal with them.  I have been working on this, and it truly has been keeping things calmer around here, which helps immensely.  The calmer I am, the easier it is to deal with things.

On to the second statement my friend posted. I think we all have days like that. I know I certainly do. Again, I have found communication to be the issue. If I admit the feelings to myself and let my husband (or my sister) know that's how I am feeling that day, we can deal with  it together. Those are the days to not take on complicated tasks, don't try to cook a meal that takes a lot of preparation, or tackle anything new. So, if I admit to the feelings I have that day, they can help me to keep things simple and calm... just what I need on those kind of days!

Just Let Me Do My Own Thing

This post is directed to all the caregivers out there.  First of all, God Bless You!  You have one of the most difficult tasks imaginable.  I can relate to your side as well because I helped care for my Grandmother, Mother and my Aunt, all who suffered from Alzheimer's and have since passed on.

I know I have mentioned this before, but one of the most difficult things for me, is to do more than one task at a time.  Sometimes, though, it's not easy to realize what makes a "task."  Basically, it is anything that causes me to focus my thinking.  Today,  it was as simple as putting away some groceries.  This used to be an easy, mindless task, but not anymore.  My husband distracted me several times during the process.  I am sure these didn't even seem like distractions to him.  When I was trying to fit things into the freezer compartment, which is never an easy task with a side-by-side, he had a bag in each hand.  He asked me to take the  bottle of juice out of his bag and put it into the refrigerator.  The next time, it was when I was putting canned goods into the  pantry and he tried to take a jar of salsa out of my bag because he knew he was going to use it during the upcoming football game.  I had already left one of the jars of salsa out on the counter for him, and the interruption was just enough to get me befuddled again.

I know some of you are saying, "Wow, she  is getting really picky."  No, I'm not.  It's just the way my mind works now (or really, how it doesn't work anymore).  I truly can only focus on one thing most of the time or, sometimes, even  just one aspect of a task at a time.  Unfortunately, my frustration leads me to be short with  him or even snap at him.  I wasn't angry or  upset with  him, I was just totally frustrated and angry at myself because I got unfocused and stressed, leading to a difficulty completing such a simple task.

This is the point I was leading to... when a dementia patient gets angry or lashes out, please stop and realize that it is most likely not you they are angry or frustrated with... it is with themselves.  Think about whether you have made the environment too confusing, sometimes even with your attempts to help.  Try to calm things or simplify things, but be careful not to be condescending.

I have come up with my own word.  You notice I use the term "befuddled" a lot.  To me, it totally describes how my brain gets twisted up and confused.  Now, I have come up with "unfuddled."  Yes, a silly, made-up word, but is the process I have to go through to get myself refocused and unstressed.  It sometimes helps for me to get involved in a different, simple, solitary task.  One that I can focus on and be successful at completing. Deep breathing helps me as well.  At times, I picture a simple jigsaw puzzle in my mind, I see it as a completed puzzle and it helps me focus.  Not sure why, but it works for me. I'm sure other dementia patients will find other ways to cope.

Powerful Video

Just a short post for today.  I was just scrolling through Facebook and found this link.  It is a powerful video about caregivers experiencing what a dementia, in this case Alzheimer's, patient experiences day in and day out.  Something everyone should see.  Here is the link.

https://www.youtube.com/watch?v=LL_Gq7Shc-Y

Lumosity!

I did not intend to endorse specific products on this blog, but I am going to make an exception.  I had seen Lumosity advertised on tv and in magazines.  Then, about three weeks ago, it was there on my Facebook page and it offered a free trial.  I tried it a couple times and thought it was interesting and could see how it was exercising different parts of the brain.  After checking the pricing and terms, I let it sit for a few days.  Then they sent me an email offering 20% off all the options of length of commitment.  I went ahead and purchased it for a year.  The cost was around $50.  (One thing to mention, their normal contract automatically renews when the term expires.  However, as soon as you sign up, you can go to "Account Settings" by clicking on your name.  There, you can opt out of the automatic renewal so that you can decide for yourself each time.  That's what I did.)

I started using it every day.  It only takes about 15-20 minutes each day.  Some of the "games" are kind of fun and I can actually tell my brain is being challenged each time.  The "games" progress at your own level.  I have found it very interesting how I am pretty good at some of them, and down right lousy at others, that's how I can tell that they are using different parts of my brain.

I don't believe they are marketing it especially for dementia patients, more for everyone to keep their brains sharp.  However, I really believe it is worthwhile to try.  I actually enjoy it and don't plan on stopping.  I would recommend checking it out for yourself and see if you think it might help you or the person for whom  you are the caretaker.  Exercising can only help the brain in my opinion. Their website is www.lumosity.com

I Am NOT Invincible, I Just Think I Am

Did you know that Frontotemporal Dementia can cause loss of balance and loss of stability when walking or moving?  Neither did I.  I knew I was experiencing these issues, but since I have always been a little bit of a klutz, I figured it was just getting worse as I got older.  The last time I was evaluated, it was explained to me that is definitely part of my FTD.  It was a relief, but also downright scary, not knowing how much worse it would get.  I am, so far, successfully dealing with it with a few modifications to my life and my self-image.  I make sure I hang on to my husband's hand or arm when walking, as well as my sister when I am with her.  When shopping, I hold onto the cart.  When walking around our property, especially on the uneven parts, I use a walking stick that my dad had made for my grandfather many years ago.  I love that stick, so I'm okay with that but sure not mentally ready to accept a cane.

I have always been stubbornly independent.  If anyone else could do it, I could do just as well or better.  My dad made sure I knew how to do basic house repairs, how to change the oil in my car and many other things.  My husband worked very long hours, often six or seven days a week.  I happily took over doing things that needed to be done... plumbing repairs, simple electrical repairs and was willing to try just about anything.

Problem is, I still think I can. We are having new block retaining walls installed, so I thought it would look good to spruce up the wooden stairs leading up to our deck by painting them with the new Super Deck paint (great stuff, by the way). Being the independent cuss I am, I declined my husband's assistance.  The steps go up an ivy-covered bank, so to get to the sides, I managed it just fine by staying seated on the bank, keeping my weight on the ground as I scooted down the hill.  I was pretty proud of myself!  Once I was done with the sides and the handrails, all that was left was doing the stair treads... should have been the easy part.  Not for me!  A third of the way down, I needed to go to the bottom to fill my paint container from the gallon can.  I thought I had been pretty smart not tamping down the lid on the can so it would be easier to open when I needed more.  It was.  Only problem, walking down the stairs without being able to grab onto the side rail was a mistake.  I fell down a couple steps, kicking the gallon of paint and succeeding only in painting the driveway a beautiful color, embarrassing myself in front of the wonderful guys who are building the walls and making my body all kinds of stiff and sore.  No real damage done... the driveway is scheduled to be seal-coated which will cover the paint spill, the men came over and helped me up and to rescue as much of the paint as we could so that there was enough to finish the job.   The difficult part was swallowing a little bit of my pride and admitting that I am, indeed, NOT invincible.

I Have Dementia, But I'm Not Stupid!

This has been a very mixed week.  A lot of things went really well, but others not so much.  I had a couple incidences of people totally dismissing the idea that I have FTD.  As I have posted before, it is difficult for some people to recognize that someone with FTD has dementia.  Just because I can have an intelligent conversation one day, please do not decide that there is nothing wrong with me or imply that I am lazy and should still be working.  Believe me, there are other days when I stumble all over a conversation because I can't think of the right words.  Plus there are many other problems that are not so evident when you see or speak to an FTD sufferer on a limited basis.  We are also good at covering it up so that we don't feel embarrassed.  FTD truly is a disability and I would give most anything to have my abilities back again.  I guess you can probably tell by reading this that someone hurt me deeply this week.  Fortunately, enough positive things happened this week, things that I was proud of myself for being able to succeed in doing, to make up for the bad stuff.

Another frustration that kept cropping up this week is when people block me out when I am talking.  I am guessing it is because they don't think I have anything worth listening to.  Yes, we can tell when you aren't really listening!  Also, if we don't agree on something, please don't assume I am the one who is wrong just because I have FTD.  Please, caregivers, we may take longer to tell you something but that doesn't mean we are stupid!  It makes me so angry when I have just said something within the past couple minutes, then someone asks me a question which makes it clear they were not listening to me because the answer was clearly in what I just said.  Or, when it's one of those days when the words aren't coming and I am speaking slowly, please don't jump in and finish what you think I'm about to say.  Please, just listen to me.

On the other hand, we who suffer from FTD can also make more of an effort to make sure we are being heard.  I am trying to do things such as asking a question to make sure I have been understood or being sure that the person I am speaking to maintains eye contact.  Other times, I just quit talking or walk away.  Probably not the best way to handle the situation, but it's better than trying to remain in the conversation and becoming angry.

My therapist is working with me to get me to, after I calm down, explain to the person what they did and how it made me feel or why I reacted the way I did.  Of course I wouldn't do that with social acquaintances, just with my close circle who act as my caregivers.  I am so very fortunate to have found a therapist who specializes in dementia patients.  I have been seeing her every two weeks for about two months now, and it has really made a difference.  I am sure there are many other therapists out there who specialize in this area as well, but I am so very happy that I am lucky enough to have one in our little town.

Just Breathe

My daughter and I  used to work in the same office.  When she would see me getting stressed, she would tell me "just breathe."  It usually worked.  First reason is that sometimes when I am stressed I forget to take deep breaths and a deep breath does tend to relax a person.  Second reason, she was letting me know she cared.  The other thing she would do is say "Moo!"  She claims it is impossible to not smile or laugh when someone says that to you.  Try it, it usually works!

This came to mind yesterday when a friend posted one of those poster-type thingees (and, yes, that is the technical term) on Facebook.  It was a quote by someone named Mandy Hale:  "You don't always need a plan.  Sometimes you just need to breathe, trust, let go, and see what happens."

That covers most of my days.  I have read that it is good for FTD patients to try to stay on a schedule.  I try, but something often messes it up... usually me.  My husband is the one who keeps me on track  most days and I call him the keeper of the calendar.  It truly helps to delegate that responsibility to someone you trust as it becomes once less thing to worry or get stressed about.  I am also very fortunate that a lot of the people in my lives understand me enough to accept "noonish" or "2:30ish" as a schedule since, even though they say I should try to stay on a schedule, that just doesn't work for me.

I have always been a "fixer" and have always been the one people are drawn to in order to help them solve problems.  I've been that person since I was a young child...  always the peacemaker in the family too.  After 61 years, I have finally discovered that I don't have to do that.  It's a good thing I realized it since I really don't have the energy needed for that anymore.  I need it all to, not so much heal myself, but help myself cope with the new problems that crop up with my FTD.  Perhaps I will make a sign for the front door, or a t-shirt for myself, saying "no energy leeches wanted!"  Don't be afraid to keep you energy for yourself!

Bad Days vs. Good Days

Yesterday was a really bad day for me for some reason.  I just was feeling "out of sorts," restless and eventually was suffering from sensory overload.

I tried dealing with the restlessness by finding a task to do that I could accomplish on my own.  I think I have mentioned previously that I used to, when I got in a mood like this, go create something... paint something or create a different art craft project.  Since I can't do those things anymore, I decided to paint a wall in our family room that I have been meaning to do for a few weeks.  I went downstairs and gathered up all the stuff I needed and headed into the room.  Unfortunately, my husband was in that room watching a football game and the looks from him I got were not exactly encouraging.  Since the wall I wanted to paint would not block his view and painting isn't very noisy, I decided to go ahead with it.  But then, he paused the game and got up to help me with it.  That was the end of that project.  His desire to help me was going to undo the feeling of accomplishment that I was looking for.  His help and support are usually just what I need, but not then.  All the painting supplies got set aside.

I did, then, go into the dining room and do a thorough cleaning on all our antique dining room chairs.  Kept me busy for a while, but didn't achieve the desired effect.  I tried sitting down to read, but there were just too many conflicting noises, thus began the sensory overload.  I went outside in the quiet backyard, then the new neighbors starting working outside and talking quite loudly.  By then I was feeling like pulling my hair out, just totally frustrated.  It was close to dinnertime by then, so I had to tackle a decision of what's for dinner.  Decisions are difficult on good days!  I pulled it off though, fixed a creative and healthy meal with lots of depth of flavor... just what I love in a good meal.  That actually helped some, being able to create something new and different to cook and it did end up making me feel like I had accomplished something.

Reading this, it seems like "what was the big deal"?  The day doesn't sound so bad to someone not dealing with FTD.  It is simply all the little frustrations of not being able to do the things I used to do sometimes leads to a little feeling sorry for myself.

That is the difference between a bad day and a good day.  I need to focus on the things I can do and admit to myself and others what I can no longer do.  This is something my therapist and I are working on.  I have actually succeeded in doing it a couple times this week.  Today became a better day when I admitted to my husband that I was not sure I could cope with going to the grocery store today, but that I was willing to try.  He assured me that if it got too much for me, he would take me to the car and go back and finish up by himself.  It turned out that the store was not overly crowded and we did not encounter anyone I had to try to converse with, so I made it through just fine!  I even managed not to panic when I realized he was no longer with me.  He had stayed behind to compare a couple different items and didn't realize I had continued on.  I stopped where I was, moved a bit out of the way, and waited calmly until he reappeared.  I also was able to calmly remind him that things like that make me panic.  Small steps...  they are sometimes the difference between a bad day and a good day.

Circle of Support

A couple more points on the I Have FTD list I referred to in my last post, deal with what I call "my circle of support" or "circle of trust." The list items are "Pick Your Battles" and "Address Changing Relationships."  Their points are that FTD and other dementias definitely change your interpersonal relationships and that not everyone in  your life will understand FTD.

I have found that many people don't understand me or what I am going through, and don't care to make an effort to find out.  People that I thought I could count on have disappointed me, but others who I never expected to help or understand have really surprised me in a good way.  I do not harbor any ill will against those who have disappointed me.  FTD is a difficult concept to comprehend, especially when most people automatically think "Alzheimers" when they hear "dementia."  I can tell you what I had for breakfast.  I can tell you where I do my grocery shopping.  On a good day, I can probably even tell you how you can find it.  Just don't ask me to get myself there... I would most likely get lost... might even step in front of a moving car in the parking lot.  I would probably remember what I was there to buy... but I would have trouble figuring out how much money I needed to pay for it.  The things my dementia have stolen from me are not things that are easy to see or understand.

Other people in my life have actually taken the time and made the effort to learn about FTD or shown an interest and learned about it from me.  I have a Facebook friend.  We became "friends" because we were playing the same game and had connected through other friends to assist each other in the game.  We have never met in person (but we will some day) as we live several states apart, but through one of those miracles of social networking, I count her as a "real" friend, and a close one at that.  She is one who has stepped forward and asked the right questions and has learned a bit about FTD and has expressed concern many times.  When she hasn't "seen" me online for a few days, she will message me and ask what's wrong.  Of course I do the same with her. Today, she asked for the link to this blog so that she could understand even more.  That simple act made me happier than she can ever imagine.  Another person who has stepped up for me is someone that I had a client relationship with when I was still able to work.  I don't remember if I have mentioned that I was working in the accounting field, but this person was one of our clients.  He has been so supportive of me and we now have a totally different relationship.  A hug from him on a bad day can turn everything around for me!

These are the people I focus on and thank God I have them in my life.  I can't rely on just my husband, daughter and sister for everything in my life.  They would fill that role for me if I needed them to, but it's better to expand my circle of trust as much as I can.  To any of you also dealing with FTD, don't be afraid to let someone in. Yes, they may end up letting you down, but  it's worth the risk... and you can always kick them back out of the circle.  Relationships can be fluid, changing as they go.  Unfortunately some dry up and go away, but there's always another one out there if you take a chance on them.

Mourn the Losses...

I found another source of information today at www.theaftd.org.  Most of the information I found  there is stuff I have learned elsewhere. Somehow, the bottom line always seems to be that not much is known about it.  So sad, but I'm not going there today.  They do, however, have a category of information called "I Have FTD" written from suggestions from people who have FTD, along with their family and friends.  

I found an interesting list of "Suggestions From People with FTD."  The first one that jumped out at me is "Mourn the Losses. Acknowledge the changes as you become unable to do as many things.  Express the sadness and then refocus on what you can still do."

What an interesting way to look at it!  Instead of just becoming totally frustrated at the things I can't do anymore, feel bad about  it, but don't dwell on it.  Focus on what I can still do.  Obviously, for me, one of the things I can still do is writing.  Verbal skills have slipped, especially when trying to talk or explain things to people outside my limited circle of trust.  That circle includes the few that actually understand the disease and I am totally comfortable that they are non-judgmental.  I trust these people to understand if I mess up my words or can't explain things, or do things that aren't "normal."  The written word is much easier, as I can easily substitute a different word when I can't think of the right word, or just sit here until I can think of it. There aren't really any do-overs when you are speaking like there are when writing.

There are things I have kept in my daily routine that have been there for years.  I have always done the crossword puzzle in the daily paper, as well as the Sudoku number puzzle.  It was always fairly mindless stuff I could do with my first cup of coffee in the morning.  I wish it was still mindless.  The crossword  puzzle is still easy for me since my word skills have not disappeared like my number skills have.  I struggle with the Sudoku almost every day, but am stubborn enough to keep at it.  I have gotten better at not letting it frustrate me when the puzzle defeats me, and this item on their list just reinforces this.  If I can't do it, so what?  It was still exercising my brain and I can  move on to the crossword for something easier to do.

I have really been mourning the loss of my ability to be artistic.  I can no longer paint or create ceramic arts the way I have always loved.  I just can't do the detail work these hobbies require.  It has been difficult to go from winning awards for my work to not being able to do it.  Doubtlessly, a lesson in humility!  I have mourned the loss of these abilities long enough, time to pack the regrets away in a box and put it up on the shelf.  There are still other things I can do well, and those are what I need to dwell on.  I will keep working on it!

I also thank God every day that I can still read.  My Nook and I seem to be permanently attached to each other!

There are a couple other thought-provoking things on their list that I think will help me, but I'll save those to share on another day.

We Are In This Together

I was planning on posting today, and was going to talk about depression.  My former brother in law once told me that Winston Churchill used to call his depression the "Black Dog," as in he was fighting the black dog.  Pretty close, I have always called mine the black demon.  It hits me and starts taking over these days due to frustrations.  Every time I find I can't do something, or figure something out, I let it bounce around in my mind until I get to feeling really down about it.

Yesterday, it was because my husband forgets, or just can't grasp, that I can only focus on one thing at a time.  I was talking on the phone with my sister and he started asking me questions about my computer. First of all, I find that rude, but understand that he was frustrated as he was trying to accomplish a task that he couldn't do on his old dinosaur of a computer.  I told him to just click on the option to the right, but he kept trying to clarify it, which confused me and meant I had to stop talking to my sister and move to a different room and literally show him where the box was.  I think it is a man vs. woman thing.  Of course, by then I was totally frustrated and annoyed and lashed out.  Then we went to the grocery store and I got confused with the checkout process which I know should be a simple thing and was something I used to do without even having to think about it.  For some reason, trying to remember the coupons and figuring out how much I needed to pay totally confused me.  After getting home and struggling to find a place to store everything, I ended up spiraling down into a deep funk.  Later, my husband found me curled up in a semi-fetal position on my bed.  He came in, encouraging me to come out to eat some dinner since I hadn't eaten all day.  When I balked at it, saying I just couldn't do it,  he sat down next to me, put his hand on my shoulder and said, "remember, we are in this together you are never alone in this." Wow!  Simple words that made all the difference in the world to me.

Today I watched a video on Facebook made by a gentleman, appearing to be about my age (early 60's). He was talking about a similar issue for him.  He had to keep reminding himself that he was not the only one being affected by his dementia, that it was a huge burden on his wife as well.

That made me realize that the focus of this post should be more positive than talking about depression.  It's about allowing someone else to help and realizing that the other person, your caregiver or partner, is feeling the frustration right along with you.  Plus, the good news is, there is nothing we can't do together.  We've been doing it for 42 years now, and he's not about to give up on me!  Got to love this man!

Decisions, Decisions, Decisions...

I now hate making decisions.  I hate making decisions because I can't make decisions, not because I don't want to make them.  My husband has always pretty much left all the decision making about things, especially anything to do with the home, up to me.  Since he would work 12+ hour days at his office, then come home and work a few more, he just didn't have the time or energy to deal with them.  And, I will admit, because if I made them and they weren't right, I couldn't blame him.  Who?  Me?

My sister is learning to deal with this problem.  After quite a few tearful experiences, she now will narrow things down to two options and offer them for me to choose.  If I still can't decide, she decides for us, when she can.  This happened when we were out shopping the other day.  I had already decided which jeans I wanted to buy.  Doesn't sound like much of a decision, does it?  But it counts.  Then she asked my opintion between two shirts she was considering.  Those two decisions I was able to make.  But when we were finished shopping and were heading to  lunch, deciding where to go became too much for me.  She again narrowed it down to two, but I said that I just couldn't handle another decision.  So she decided, though she picked the safest alternative, our usual go to spot for lunch.  She realized if I was overloaded that I could not make a decision, the quietest place and the most familiar place was the best.  My husband is learning too, but it's taking a little longer since he has relied on my decision making for 42 years.  Yes, they both still get frustrated some times when I can't decide, but we are learning...

My suggestion to you if you are dealing with someone with dementia?  Narrow down the options as much as you can, hopefully to just two.  If you can't do that, have the person help you eliminate definite no's.  Then wait for a while, even if only a few minutes, before addressing it again.  Don't allow it to come to the point of them becoming totally frustrated.  Obviously, if it is a life or death, or a very important decision that needs to made immediately, make the choice for them.  If you choose the wrong one, it will be okay.

Definitely Not a Social Animal

I was so very relieved when I learned a while back that another symptom of Fronto-Temporal Lobe Dementia is the lack of, or fear of, socializing.  By the time I had this information, I had already pulled away from most of my friends, and no, most of them do not understand even though they are aware of my disease. Socializing has become so stressful and frightening to me, I find it very difficult.  I am constantly afraid I will say or do the wrong thing or make the other people uncomfortable.  It also can become confusing to me if there are too many people around, or if there is a noisy background or just too many things or conversations going on at once.  I just can't handle it well, become agitated and desperate to get away or hide.

That being said, yesterday was a true gift.  Good friends of ours (he worked with my husband, until my husband retired, in three different cities... Pittsburgh PA, Philadelphia PA and Charleston IL.  After retirement, my husband and I returned to PA, to my home town area, while they remained in Illinois. Yesterday we were invited to our friend's parents house to visit with him and his family just two hours away. We had not seen any of them for at least two years.  It was such a blessing to catch up with them.  We know each other well enough that I didn't have to worry at all about what I said, what I did, if I looked like I was drunk when walking, nothing.  If I had done something (or maybe I did, I'm not sure) they are the kind of people who wouldn't care one bit!  There were three generations of them there, the oldest is 88 and the youngest 9 and I think we all had a really great time.  But once it was time for the Steelers preseason game to begin, it was time for us to leave so they didn't miss the game.  Fortunately, we were recording the game at home!

If you are dealing with someone with FTD, or any dementia most likely, it is important to keep this in mind.  Try to keep social occasions in a calm, quiet place with few distractions and, if possible, in a familiar place.  Perhaps point out where the restrooms are and find them a comfortable spot.  Do encourage, but not pressure, them to join in and do not criticize them if they do something out of the ordinary or if they don't want to join in the activities or conversations.  Reassure them that you love them and want them there with you if need be.

I am lucky that my husband understands all this.  There is nothing like it, when he touches me and just asks if I'm doing okay, always with a smile!

August 7, 2014 Too Good to Be True?

I have always been a skeptic.  That's probably why I loved math and science... things that can be proven.  I also believe that I have the best chiropractor ever.  She helps me with back pain, headaches, all the normal chiropractic  miracles, as well as mentors me on stress reduction, nutrition and vitamins.  When she proposed scanning my brain with a software package she has been successfully using, I decided it was worth doing.

Today, she went over the results with me.  Hmmm... showed deficiencies in the front and right temporal lobe.  Interesting, since that's also what SPECT tests have also shown and this did not require radioactive tracers or radiation exposure!  Next step she has proposed is treatments based on the findings, specifically brain stimulation techniques.  I have seen other patients utilizing the treatments and it all appears totally harmless.  It's not chiropractic manipulations or anything physical, just mental exercises and such.  

Now, I just have to get my husband on board since he will have to drive me there twice a week now instead of once every two weeks.  He is totally supportive of mes though, so I'm sure that won't be a problem even though he is ten times the skeptic I am.  I will keep you updated on the progress as we go along.

I am quite thankful that I have this encouraging possibility presented today.  It took the edge off of a frustrating experience.  I tried to make a purchase at the pharmacy for $1.58, using cash, and it totally befuddled me.  My husband stepped up and assisted me, but I ended up embarrassed and frustrated.  I am focusing on the positive!!!

Have Fun... It Might Help!

I have been given software to help improve brain function by both a neuro-psychiatrist and my insurance company.  It is supposed to be fun, easy to use and great for stimulating brain function.  Only problem???  They were sooooo boring that I would dread doing them.  Then I read online that the particular software was developed to improve driving ability in older adults.  I realized then that at least two of the "games" were to increase field of vision.  I figured I was just wasting my time, plus if they were so boring, how much brain function could they possibly be stimulating.  My solution?  I started playing games on Facebook, silly fun games that require quick thinking and hand-eye coordination.  My two favorites are Zuma Blitz and Solitaire Blitz.  They are both entertaining to me and both seem much more brain stimulating than the medical software games were.  Plus, I enjoy myself!

I also read a lot.  I have always enjoyed reading, and now I can justify to myself that's it's okay to just sit and read when I want to!  Just about any genre of books can't help but stimulate the brain and keep it active.  I'm always learning new tidbits of information when I read.  I don't have a medical degree, but it sure makes a lot of sense to me that this must help, and sometimes common sense is the best thing we have going for us.

Memory Isn't the Only Thing Affected

I was printing off some information on FTD for my chiropractor to read just now, and thought I would share this link:
http://www.nia.nih.gov/sites/default/files/frontotemporal_disorders_information_for_patients_families_and_caregivers_0.pdf

Looks like you will have to cut and paste to check it out.  It is a booklet produced by National Institute on  Aging and the National Institutes of Health.  It does a pretty decent job of explaining FTD.  Many people have never heard of FTD, but are perhaps familiar with the terms "Pick's Disease"or "Huntingdon's Disease."  These are both types of Fronto Temporal Lobe Dementia (FTD or FTLD).

I have spoken to many people who told me they were certain there was something "wrong" with their brain.  One was actually told by a doctor that she was being silly and that she was much too young for Alzheimer's Disease.  This was a neurologist who should certainly know better.  First of all, there is such a thing as Early Onset Alzheimer's.  Secondly, FTD's are often found in younger people.  Bottom line, anyone convinced that there is something wrong with their brain, it should not be dismissed by any medical professional.

That brings me to one of my biggest pet peeves.  Several friends or acquaintances have been shocked when I could recite a favorite simple recipe or remember something from the past that they had forgotten.  Their immediate response is "See, there's nothing wrong with your brain if you can remember that!"  I try to explain that I can recite a recipe, I just can't follow it unless someone is with me and helps me measure ingredients and helps me keep track of the steps.  Or, since my impulse control is severely limited, I might reach in the oven to remove something, forgetting that I need to use a pot holder.  It's not that I don't know what a pot holder is, it's that I know what I want to do and do it without considering consequences.  Another example I frequently use is when I go outside to get our mail from the mailbox, which happens to be on the other side of our little street.  I just go, I forget I need to stop at the end of the driveway and make sure there is not a vehicle coming.  Learned that lesson from a close call with a large truck hauling stone.  I try to remember that it must be terribly difficult to understand the difference if one has no knowledge of FTD, only of Alzheimer's.  I constantly have to remind myself of that and not show my frustration or anger.

This lack of impulse control goes hand-in-hand with the loss of a filter between brain and mouth... but that's a story for another day...
  

Day to Day Frustrations

August 2, 2014

I was looking forward to a good day today.  I did some heavy house cleaning yesterday, so I planned on a relaxing Saturday.  I sat down with the newspaper and my first cup of coffee.  I first became distressed when I attempted to complete the daily Sudoku puzzle.  I am a fairly  intelligent person and have always loved playing with numbers and prior to my diagnosis of FTD, was employed as an accountant.  So when,  lately, I began having difficulty completing the Sudoku puzzles, I became frustrated, and this morning was no exception... couldn't do it again.  I should take a moment here to mention that with fronto-temporal lobe dementias, the executive functioning of the brain is the first to suffer.  This makes it difficult to reason things through, come up with solutions or to learn new tasks.

My next task related to the newspaper, was programming the DirecTV system to record any shows that are not already set up to record each week.  This usually includes any specials and the daily Pittsburgh Pirates games.  I have been a life-long fan of the Pirates and my husband, who  is originally from Illinois and a Cubs fan, has learned that it's much more enjoyable to be a Pirates fan, so we record all the games to make sure we don't miss them.  When I started going through the schedule, the games were already set to record, which meant my husband had already done it.  I became extremely agitated because I took this to mean that either I had screwed up the recordings last week, or for some other reason, he no longer thought I was capable of doing the job.  Of course, this turned out not to be true.  He was just setting up some auto races to be recorded and went ahead and did the baseball as well.  But, by then, the agitation was settled in too deep to shake it off.

I wasted more than a couple hours stewing about it.  I did, finally, come up with some conclusions that will be interesting to discuss with my therapist next week.  I realized that my greatest accomplishments these days are that I can still take care of the house and am still a pretty excellent cook.  Excuse the bragging on the cooking part, but I am.  But these are pretty mundane tasks and not very intellectually stimulating.  Of course, neither is programming the DVR, but it was something I was used to doing every Saturday morning. I have always used my intellect in the different jobs I have had through the years and, in addition, I was always a creative and talented person.  Used to be, when I would be feeling badly about anything, I would go to my craft room and create something, or paint something.  But, I can't do those things anymore.  I am so very fortunate to have an extremely supportive husband who is usually able to help me during these times when I am giving up on myself.  I ended up doing a couple things around the house that I have been putting off for a couple years which helped almost as much as creating something.  Then I went out on the deck, read part of a book and watched the wildlife.  At least the end result was a relaxing second half of a Saturday.

The Dreaded Diagnosis!

I was diagnosed with FTD, fronto temporal lobe dementia, about three years ago.  Just getting the diagnosis was frustrating enough.  I had been having some problems for a while, especially dealing with cash transactions in stores.  Sometimes when I was the one to make a lunch run from our accounting office, I would have trouble remembering the right streets to take to get back.  I finally knew there was definitely something going on when I got lost one morning while driving to work, the same place I had been working for five years, which was a very simple route from my home.

I live in a very small town that borders on a small city in central Pennsylvania.  There are not many doctors to choose from.  I started with my primary care physician who is an extremely caring and knowledgeable doctor.  She agreed there was definitely something going on, and with my family history of Alzheimer's, immediately started me on Aricept and referred me to a local neurologist.  The neurologist strongly suspected Alzheimer's Disease (AD), again because of my family history.  My maternal grandmother died from AD, followed by my mother, then both of her siblings, so  it is a strong family history.  The neurologist sent me to a neuro-psychologist for testing, which turned out to be the same testing used to screen for AD.  I had done this testing years ago as part of an AD research program in Springfield, IL.  The testing was done by a graduate student of nearby Penn State University.  I never met the psychologist.  He did call me and tell me he was reporting to the neurologist that I didn't have any memory problems, so he believed my problem was depression.  Only problem?  I never claimed to have any memory problems!  During my follow-up visit with the neurologist, he agreed with the depression diagnosis, but then added Namenda, another drug  used to treat AD.  Excuse me?  I am only depressed, but you are loading me up on meds for AD?  Something isn't right.

I returned to my family doctor, totally frustrated, and she said, "Cindy, I have seen you depressed, and this is not depression."  So we started to try to find a physician in Pittsburgh, about 2 hours driving distance.  That doctor, a neuro-psychiatrist who co-chairs an Alzheimer's Disease Research Center, agreed to see me as a private patient and ordered a SPECT exam which provided us, finally, with a diagnosis of fronto temporal lobe dementia (FTD).

This blog will be about the progress of my FTD, the difficulty of finding proper care, and the daily frustrations of dealing with the disease, now and as it progresses.  I may bounce around between past frustrations and current daily frustrations, but I will try to not make it confusing.  I will even try to build in some information on FTD since it is often overlooked because all the attention is put on AD which has a higher number of patients.