Tuesday, January 27, 2015

Informational Video

https://www.youtube.com/watch?v=7l4f9nGvmF4&sns=fb



The link I have posted here is a video of wife talking about her husband's battle with FTD. They were so fortunate to find Dr. Brad Dickerson at Massachusetts General Hospital who is an expert in FTD. Of course, this was after years of misdiagnosis, primarily of depression.  I found their story fascinating and was greatly encouraged by Dr. Dickerson and his research. I wish every one with FTD had access to facilities and doctors like this.

Sunday, January 25, 2015

How Our Caregivers Can Make a Difference

All you caregivers out there, we couldn't do it without you! This post is to give you some insight into how you can make it even better.

If you read my last couple of posts, you will remember that I have been fighting the blues. I made some real progress in that regard this week.  I am going to tell you about a couple of them, gearing this toward the caretakers so that you realize it doesn't always take a lot to improve an FTDer's life.

On Monday, my sister broke a tooth and made an appointment to get it fixed the following day. Since our dentist is about a 40 minute trip, she asked if I wanted to ride along. I jumped at the chance since it seemed like quite a while since I  had been out and about. Plus, our dentist is a lot of fun. I know that will sound strange to a lot of you, but he is great. He sings to you, albeit off key. His work is excellent and he can give Novocain shots that don't hurt a bit. But I digress... My sister is braver than I am, apparently, because she chose to go without the Novocain.  I thought she was crazy since I am a pain wimp, but it meant that after she was done, we could go out for an early dinner. Since my husband owed me a birthday dinner (we won't go into that!) we chose a nice restaurant, had a drink, a delicious meal and shared a dessert. Our waiter was a lot of fun and it was a nice relaxing time. Amazing how a trip to the dentist provided us with a great day spent together.

I'm going kind of backwards here, but we need to go back to last Saturday. I had agreed to have lunch with a friend from where I used to work, We hadn't gotten together for probably 2 years.  I had also run into another friend whom we had not seen a while on Thursday at a doctor's appointment, and I told her that the next time they were down this way, give us a call because we would love to have them visit. Wouldn't you know it? It also got scheduled for Saturday. I was in such a tither that I actually canceled both of them the day before, because I was feeling too overwhelmed. Note to self: Don't schedule two social events on the same day!

Fortunately, the friend from work contacted me again and we set up a new lunch date for this afternoon.  My husband dropped me off at the restaurant (God bless him, he sat there with me until she showed up so I wouldn't become panicked) then she drove me home afterward.  That was fun too... turns out she now drives a Hummer and I had always wanted to ride in one.  Though getting in was a challenge since my leg weakness is not conducive to climbing up into it. My cane would have helped, but I was vain enough that I didn't bring it along because I did not want her to see me using a cane.  Silly me! Back to the lunch, we had a really good time, lots of laughing, got caught up to date on a lot of the clients whom I miss dealing with and caught up with her life and family.  She is getting married in June. I hope I will be able to deal with the commotion of it all.  Perhaps if I just go to the ceremony and skip the reception?

So, it doesn't take a lot to break up the boring pattern of the every day life of someone with FTD. I managed two social occasions this week without freaking out and had a good time. Okay, I confess that I did have to take an Ativan when I got to the restaurant today. That was because shortly before we left, I realized I had lost a necklace which caused me to run around in a panic trying to find it, leaving me wound up pretty tight. Finding it (in my purse where I had put if for safe keeping) helped, but needed the help of the sedative so I didn't refuse to go. I don't take them often, but sometimes they are the answer.

I almost got out the house another day this week. My husband had a couple stores he needed to visit in town, so he invited me to go with him since my trip with my sister was such a success.  But then, as it neared the time to go, he started telling me where we would go, what we would do, and what we would not do. What we would not do was stop for lunch, we would just run in and out of a couple stores and hurry home so he could have the usual snacks he has for lunch each day. That quickly gave me the impression that he didn't really want me to go along, so I refused to go. Actually, I broke down and curled up in a fetal position to avoid dealing with him. Of course I was incorrect in assuming he didn't want me along. Later in the day I explained that a little encouragement was all I needed. If he simply had said he was sorry he caused me to feel badly and that it would be more fun if I came along, that he really wanted me to go, I most likely would have gone.

Why did I include this disaster? I just wanted to explain that just because someone has FTD, does not mean that you should treat them like a child and make all the decisions. It is important that we feel included. No, we with FTD (or at least I) are not able to plan the excursion, but present us with a couple little choices so we feel included. In this case, he could have asked if there was anywhere else I wanted to stop and if I wanted to stop somewhere for lunch or was I okay to just come home. Unfortunately, with my increasing limitations, I tend to feel pretty worthless and need reassurances more than I should. I'm sure he is not going to be happy I included this incident in today's blog, but I thought it was a good example for caregivers.  He is actually a wonderful caregiver for me, but even he can't do everything perfect every time, and he is learning!

Sunday, January 18, 2015

Is It Good to Remember?

The first thing you learn when you find out you have FTD, or that a loved one does, is that it is not Alzheimer's Disease.  I have written about the frustration that many have while trying to get a correct diagnosis.  One of the biggest differences is that, in many cases, the memory remains intact. It's in all the research and informational packets out there, including ones in the links that I have included in previous blogs.

The preserved memory is one of the big reasons it is difficult to get a correct diagnosis.  Most dementia screening is geared to memory tests. I continue to have increasing difficulties with getting confused over simple things. This is not a memory issue, it is that loss of executive functioning, not being able to figure things out or think about two things at once.

When I was first diagnosed and started researching this disease called fronto temporal lobe degeneration/dementia, I was greatly encouraged that it was likely that my memory would remain intact because, without getting into the details of the different types, the type I have, Behavioral Variant FTD (bvFTD, formerly called Pick's Disease) quite often spares the memory.  I figured most of the other symptoms, such as getting lost, loss of empathy for others, loss of impulse control, poor judgement and decision making, I figured these things could be compensated for until it got really, really bad. That has actually worked to some extent as my husband watches over me and has taken on a lot of responsibilities that used to be mine.

The bad part is that I do remember! I remember the person I used to be. I remember all the things I used to be able to do. I miss painting and creating things. I miss being able to watch a movie all the way through. I miss being a good friend. I miss having fun! I miss being a wife and feeling comfort in my husband's arms rather than being so dependent on his care. I miss being able to travel. I miss being able to pick up the phone and call someone. I miss being able to go somewhere or do something by myself. I actually miss working (well, sometimes, definitely not during tax season). The list goes on and on...

Now, I often find myself wishing that the disease would take my memory. That is quite selfish of me because I do realize that it would be much more difficult for my family. I am just having a really bad week, what my mother would have called "a feel sorry for Cindy week."  We used to only allow one day of feeling sorry for ourselves when something rotten would happen, then we would get on with making things better. This week though, just when I would start feeling like I could get above the rotten things, another one would pile on. A huge problem of being so dependent on others is that I leave myself wide open to being disappointed.

Are you reading and thinking "Wow, get over yourself already!" or that I should stop thinking about the negatives.  That's okay, because that's what I am thinking the entire time I have been writing this. As I have said many times, I am so very thankful that I still have the ability to read and be aware of what I am reading, along with the ability to write somewhat coherently... so VERY thankful. I am also extremely thankful that I have family to care for me. As I learn of others whose loved ones have abandoned them because of this disease, or the others who are way too young to have to suffer from this disease, some even still trying to raise their children, I do realize how fortunate I am.  I do. It is just tough some days to balance it all out.

I apologize for being so down in this week's blog. I was going to skip writing one this week, but thought that perhaps it might help caregivers to realize some of what is trapped inside the mind of the loved one they are caring for, or at least what is trapped in my mind.  Now, where did I put those bootstraps?  I need to start pulling them up!

Sunday, January 11, 2015

Great Article for All to Read, some trials and many blessings...


https://www.linkedin.com/pulse/16-things-i-would-want-got-dementia-rachael-wonderlin

Had to start out with this link today.  It is an awesome article by someone who must be an amazing caregiver!  Please read it if you are a caregiver or if you are an FTD sufferer, read it and give it to your caregivers.  It is, of course, geared to people with Alzheimer's Disease as most things dementia related are.  Some of her items you would have to change up a bit for FTD, like including me in family gatherings. Gatherings would need to be kept small and calm, but the idea is the same.

It should open the eyes of some caregivers, family members and friends of FTD sufferers, and those with any form of dementia.  To some, all these 16 things will seem obvious, but there are still more who need to read it.

I sat with a family member for three days when she was admitted to the hospital with end stage Alzheimers, until her death.  I didn't sleep much, and got few breaks, until my sister arrived from several states away to help me out. Her other family members, more closely related than I was, did not understand that she could not handle staying there alone and that no one, absolutely no one, should have to die alone. She was obviously confused with where she was and why she was there and was in pain.  I held her hand the entire time and talked soothingly, praying aloud and monitored her care. It broke my heart that her immediate family members were not with her. For one of them, it was unavoidable and much regretted, for the other, it was shameful. This family member lived within a few miles and, get this, worked right in the same hospital and apparently believed that a couple quick four or five minute visits each day was adequate. I am so very thankful that I could be there with her and thank God for that blessing often. Fortunately, I was less far progressed into my own dementia at that time.

This happened about two and a half years ago. Thinking about this today kind of scared me, because I realized how much I have deteriorated in that time period. My own condition also causes me to wonder about something. My grandmother, my mother, her sister (my aunt) and her brother, all died from what was diagnosed as Alzheimer's Disease. Now that I am well informed about FTD, I strongly suspect that they all had FTD, at least to start with. Some studies show that FTD sometimes does precede Alzheimer's in a patient. Since it can only be truly diagnosed under autopsy of the brain, we will never know for sure.  I do know that looking back at the earliest signs of a problem with my mother, in hindsight unfortunately, were similar to mine. The most striking similarity is that she was getting lost in familiar places and having difficulty figuring out how to get from one place to another, even if one was in sight of the other. So much more research is needed on this often ignored condition.

This week, I continue to have worsening problems with balance and walking. I also am finding myself confused as to how to do familiar things. This morning, for instance, I could not remember how to turn on my computer. I kept touching buttons on the keyboard and just staring at it, until the on button finally registered in my mind. I fight to keep these realizations from leading me into depression. I am so very thankful for my online support group. Sometimes, it is only the other sufferers who can relate and understand. I am also thankful that I see my therapist this week. She can often pull out solutions to little problems for me. I may not be fortunate enough to live in an area large enough to have medical doctors nearby who understand FTD, but I am so blessed to have found a psychologist who does.

I have been fighting the nasty virus that so many seem to have right now, that it does not help my mental state. Add in the post-holiday blues and my birthday coming up tomorrow (my birthday is a long and painful story in itself... bad memories on my birthday), I am struggling.  But, I am determined to win and overcome this melancholy. Thank you for "listening" to my story about the death of my loved one from two and a half years ago. It is something that still disappoints me in a family member who I have loved deeply, still do, and felt close to. I just don't understand how someone can allow a loved one to be alone in times like that. Fortunately, I know I will not be alone. I have my husband, my daughter and my sister and I imagine they will all be by my side, they certainly are now!

Wednesday, January 7, 2015

Sunday, January 4, 2015

Multi-Tasking



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I have a link to suggest.  http://www.huffingtonpost.com/kyrie-sue-carpenter/dementia-101-6-ways-demen_b_6373612.html  The title of it is Dementia 101 - 6 Ways Dementia Changes How You Think. This one is, as most things are, more geared to Alzheimer's Dementia, but there are some helpful bits in there anyway.  May be new info for some of you, or a source of info to send to someone who does not understand what you are going through, It is short and sweet, no in-depth stuff, but a good overview.  Most places I go to get more information about Fronto Temporal Lobe Degeneration (that's the latest term, degeneration instead of dementia) it will say "loss of executive functioning." This brief summary of dementia gets into that a little.  Basically what executive functioning means is being able to figure out how to do things, prioritize, multi-tasking.

I have come to realize that life includes a lot more multi-tasking than we realize. I am now attempting to break up all my tasks into smaller ones. For instance, I will set a goal of cleaning one or two rooms a day, instead of trying to do the whole house. Also, since it now takes an entire week to clean the house, I have learned to accept some dust. I even break down cleaning one room into smaller tasks, such as putting things away, get out the cleaning supplies, cleaning the counters, cleaning the sink etc. Just focus on a small task and worry about another one after it is done, unclutter the mind that can't handle clutter.

All tasks, even daily tasks taken for granted, have to be broken down. Something as simple as getting on the internet becomes: make a cup of coffee, go to your computer, boot up the computer, wait for it to boot up. I don't know if I am explaining this well enough.  I can't think "go to the computer and check your email," it has to be broken down to separate thoughts. Unfortunately, often I get the computer turned on but totally forget why I was going online.

People are always trying to reassure me, "It's not dementia, I often go into a room and forget why I went in there." Yes, I used to do that too when my brain was still healthy, we all do it. While that is a good analogy, you have to magnify that confusion by at least times 10 to even begin get to the confusion of FTD. Incidentally, in one of my online searches, I found an explanation for why you forget why you went into a room. Your brain see the doorway as a portal, a signal that it is in a different place so that triggers a response of thinking you are switching gears, starting a new task. Made sense to me.

Just this morning, the knob on my desk drawer was really loose and I fiddled with it for at least ten minutes until I could figure out that I needed a screwdriver and a wrench. Then I decided I could live with it loose, didn't even attempt it. I used to be the one who did all the repairs in our house because my husband was always working. I even did plumbing repairs as long as it didn't take a blowtorch. I was always smart enough to not trust myself with one of those. I'll stop droning on about it, I sometimes forget that "normal" people don't need things explained to them six times.

A quick update on how I am doing: I find myself, more and more often, stuttering and searching for words. I give up and stop talking because it doesn't seem worth the effort.  Of course, I have always talked too much anyway, so many probably find that a good thing. The gait problems are getting worse as well, making walking more uncomfortable. At my daughter's home for Christmas, she lives in a third-floor walk-up apartment and the stairs are the open kind. This was doubly difficult. Not only did my legs not want to listen to my brain, but the open stairs made my depth perception problem worse. I broke down and used help... an old walking stick my dad made for my grandpap years ago. Doesn't seem so much like a cane in my mind, just a family heirloom. It's getting close to the point where I will have to seriously consider using one though. I am so very lucky that my husband and daughter have enough patience to stick with me while I slowly creep along.