Frustrations... every day ones and one huge one!

I wonder why I get so frustrated all the time?  Well, truthfully, I do know why. It's all about the FTD. I will write about three frustrations from this past week, starting from the smallest to the biggest.

At least once each day, I catch myself struggling to figure out how to do something. Today, it was opening our front door from the outside.  It is a handle where you have the thumb latch that you push down and just push. Couldn't figure it out, took me about five tries of different combinations of things. God bless my husband! He stood behind me and allowed me to figure it out and never said a word.

Yesterday was a little worse. My husband handles my pill organization for me and fills my pill containers for the week. There is one organizer for morning and one for night. We have a system of shuffling them around that works for us. That is, it did until yesterday. When I was preparing for bed, the night time organizer for that day was empty. Uh-oh! I had bathed earlier in the evening that day instead of closer to bedtime. I think I must have taken them after I bathed. The one medication makes me very sleepy and I did remember being sleepy earlier in the evening. Usually the worst thing I do is forget to put in my glaucoma drops, but he usually catches it and reminds me. Now, he is going to be even more fussy about whether and when I take them which will drive me crazy.

If I continue to mess up taking the pills, I guess we'll have to get one of those programmable boxes that work on a timer. You can't open them until the correct time that was set. One more thing to make life more complicated.

The biggest frustration of this week, more likely of this decade, was in an email from my daughter. She lives in a large city in NC, we live in a small town in PA. We have been trying to convince my husband to move us down there to be nearer to her so she can help care for me. He refuses to do it, won't even discuss it. He doesn't take to change very well anymore. I made a list of pros and cons and gave it to him because sometimes he grasps things easier when it is in writing. Still won't talk about it.  So, one evening this week, I received "the" email... she said she has come to the horrid (my word,not hers) realization that if he won't move us down there, she will have to quit her job and move back up here. Nearly broke my heart. There is nothing for her here, that is why she moved to NC in the first place.

I really, really, really don't want for her to do it. I don't want her to give up her life to become my 24/7 caregiver. The members of a support group I am in all say that I should allow her to do it, That  after I am gone, she will most likely appreciate that she did all that she could. That makes sense to me IF we would move down there. I think I could accept that, allowing her to move in with us and providing care for me. That way, she would still have her job and friends surrounding her. All caregivers deserve to have a support system around them to keep them grounded and sane. It allows them to better preserve their own health, physical and mental. What good is the caretaker if she is worn out all the time? My biggest fear is that if she moves back up here and becomes my 24/7 caregiver that she will come to resent me. I could not handle that!

I have a feeling this frustration is going to be a long one. I will keep trying to convince my husband that it would be a good idea to move as that truly seems to be the best solution.  Wish me luck! 

No More Feeling Sorry for Myself

I came to my blogsite today with the intention of deleting the entry I wrote yesterday, but when I reread it I realized it was all true, just whiny. So I left it up.  Now you know what I am like on  my "Feel Sorry for Cindy" days.

My mom and I, many years ago, had an agreement that when something bad happened to either one of us, we would have a "Feel Sorry for ____" day.  Just one day, after that you had to put on your big girl panties and deal with it. It was tough after a broken heart, but it truly helped us.

So, after my Feel Sorry for Cindy day yesterday, today I face it all with a better viewpoint. All the same frustrations exist and the headache still exists, but today I will not let it defeat me. Today I will:

    Walk away from arguments.
    Ignore other people's reactions to my limitations.
    Avoid watching depressing or anxiety producing shows on television.
    Same with books, only reading light-hearted books and being very thankful I can still read!
    Go outside and enjoy the sunshine.
    Watch the birds at the feeders and the squirrels on the deck, laughing at their silly antics.
    When someone calls me on the phone, if they start being a Negative Nellie/Nelson, I will end the conversation.  As nicely as possible, of course.
    Try to stop dwelling on the things I cannot do, or that my husband prevents me from doing.
    Instead, find some easier tasks to do and feel good about myself for being able to do them.

    Above all, BE THANKFUL.
    Thankful for still being able to read and write. Both take longer, but I can still do them.
    Thankful that I have a husband who loves me, puts up with my mood swings and does most of the things I can no longer do. How many husbands do laundry? Mine does! I have never been able to get him to do much in the way of house cleaning, but I'm sure that once I can no longer do it, he will step up
    Thankful that I have found doctors who understand my situation, even if they are not extremely knowledgeable about FTD, they accept and support my decisions as to what we will treat and what we will not.
    Thankful for my online support group where they understand even when no one else does, yet, set me straight when I need it.
    Thankful for our beautiful daughter. Even though she lives 8-hours away, she calls me several times a week to keep up to date on what is going on with me and to keep me involved in her life. I will be try to not resent the fact that I do not get to see her more often because of my husband's refusal to drive there to visit.  Oops, slipping a little into feeling sorry for myself again.

Anyway, you certainly get the gist of what I am trying to say. When I need a pep talk, I will come back and read this again and again. I don't need to defeat myself with a negative outlook!

Just Plain Weary

I cannot come close to explaining to you how tired I am.  Weary might come closer to the condition than just tired, but it has become all-consuming.

I am physically exhausted most of the time. Everything I do or attempt to do takes a much greater amount of effort and energy than it used to. Often because I have to start and stop a task several times because I forget what I am doing, what I need to get it done or how to do it. This is made worse if someone tries to talk to me while I am attempting it. This constant frustration, some days, leads me to not even want to try to do things.

The constant headache wears me down every day. I have always had a lot of headaches, even migraines every day for a couple years, but the FTD headache is a whole different animal. It is unrelenting and pain killers just don't seem to do much to alleviate them. The headache just doesn't go away; it is with me 24/7. Makes me more than a little grouchy as well and probably more than a little difficult to live with.

Sleep is another issue. Whatever you do, don't criticize someone with FTD for needing to sleep a lot. I have heard many caretakers say that they think their loved one sleeps all the time because they are bored or refuse to do anything. At least in my case, this is totally untrue.  Sleep comes fitfully. I often stay in bed for 12 hours, yet feel like I had very little sleep. Fortunately, having a couple cups of coffee does help me get going just as it does most people.We have learned to adapt our schedule to this problem and try not to schedule activities or appointments until after noon.  Fortunately, that works well for my husband as well. It would be worse if I didn't want to do things until after noon and he wanted to get them over with first thing.

Unfortunately, it is not just the physical exhaustion, is is also the emotional exhaustion. The sheer frustration of not being able to do things that were second nature to me can defeat me some days. It is also the frustration, as I have said before, of not being seen or heard. I truly think I am invisible some days and begin to wonder if maybe I am not speaking when I think I am. This happens in stores, offices and, yes, at home. Almost anywhere, with most anyone, when my voice starts stuttering or causing long pauses, people ignore me and look to my husband to do the talking.

On the home front, my husband allows me to make any decision I want to, as long it is the one he has already made. When he reads this, he is going to wonder what the heck I am talking about, because I am convinced he doesn't realize that this happens. When I do suggest or decide I want to do something else, he steers things right back to where he wanted. I finally give up, say that I don't care, just do whatever he wants. Later, he is convinced that what we ended up doing is what I wanted all along. In his defense, he suffers from anxiety issues and because of this, he desires to have everything planned out, just so, ahead of time. Most days, it doesn't feel worth the effort to try to help make the decisions or suggest something I have an interest in doing, I just say that I don't care, whatever he wants to do. For some reason, those frustrations add to my feelings of exhaustion.

Embarrassment adds to the exhaustion as well.  Yes, I know, in my head anyway, that I should not be embarrassed by my limitations, but when people snap at me or give me that looks of "Boy, this one is an idiot," I can't stop the feeling. One of my first symptoms that I had a problem was how confused I would get when attempting to make a cash transaction. So I learned to use my credit card instead, which made it easier. Unfortunately, now, even that confuses me, especially when it is somewhere that you have to slide your card and make all the entries yourself. The system is different from place to place and truly rattles me. Then, when the salesperson gives me that look or rudely barks the instructions, it defeats me and leaves me exhausted. Mental exhaustion is just as debilitating as physical exhaustion.

Some days, I think I would feel better if I could just sit and cry for a good while, that it would be cathartic.  Problem is, this damned disease won't let me cry anymore!

And.... yep, it all makes me grumpier and more difficult to live with.  That is why, when I read caregivers ranting about how uncooperative and irritable their loved one is and how they believe they are intentionally making the caregiver's life more difficult, I become enraged. Just like with a young baby, if they are crying, you check to make sure the diaper is dry, nothing is poking at them, that they aren't hungry, hot or cold, etc. The caregiver should be looking into what could possibly be making their loved one grumpy or difficult to deal with.

Now, thinking about all this, I am exhausted. Most likely, I will go somewhere and curl up in a semi-fetal position and try to escape. It never works, but I end up doing it a lot anyway.

My Tirade got Published!

Today's blog is going to be a little different. In our local paper this past weekend, someone dared to write about, basically, those people who sponge off the government, the ones on Welfare, SSI, SSD and food stamps. It took a while for the steam to stop coming out of my ears, but once it did, I sat down and wrote a letter to the editor of our local newspaper, the Altoona Mirror, which was published in today's edition.  First, my letter:

SSD Comparison Wrong, Offensive

    "In last Saturday's Mirror, a letter writer lumped SSI and SSD into the same category as welfare and food stamps.
    For clarification, Social Security is labeled as an 'entitlement,' not because the recipients feel "entitled," but because we are entitled to Social Security because we paid into it for 40-50 years.
    I do not deny that there are many who abuse the system, which should be addressed by reform, not by the condemnation of all who receive Social Security.
    I was forced to apply for Social Security Disability benefits over five years ago. This would surprise most who know me because most of the time, I appear to be fine. What you cannot see is the degeneration of my brain by a disease called Fronto-Temporal Dementia (FTD).
    Fortunately, Social Security understands that FTD is as serious as Alzheimer's Disease, if not worse, and I was given immediate compassionate approval. All that said, I would give up all that I own in order to be able to give up my benefits, go back to work and be rid of this terminal disease.
   Even with my receiving Social Security Disability payments a few years before I would have been eligible for regular SS, the total benefits that my husband and I collect will never add up to the total amount that the two of us contributed, so it should never be called a handout.
   I am deeply offended that anyone would imply that I am leeching off the system by collecting Social Security Disability.
   Cindy Odell, Duncansville

I have written letters to the editor a few times over my 62 years. This is the first time one was published, in its entirety with no editing. I am guessing that means that the editors "got it." Those who have mentioned my letter to me, at least so far, appreciated the points I was trying to make and totally agreed.

What angers me the most, is that I, and I suspect many others dealing with FTD, tend to sometimes feel worthless when compared to the functioning people we used to be. I get so very frustrated that I cannot do the things I used to do. I get embarrassed (I know I shouldn't) when I have to admit to someone that I cannot do that anymore.  I certainly do not need uninformed people implying that I am lazy and taking advantage of the system.

Did I change the mind or attitude of the other letter writer? I doubt it very much. It is pretty difficult to change the narrow minds of ill-informed blowhards.

I must also say here that I am still thankful every day that I have not lost my ability to write. Well, at least type, my writing is illegible. Having spent a short while, years ago, writing for a different newspaper, it is reassuring to me that I can still put a thought together and arrange my thoughts well enough that the reader can understand what I am saying. Of course, I would probably be fired from that newspaper these days, they would not want me to spend a full work day composing something as little as this letter, but I don't care how much time it takes me to do it, just that I can!
   

Why Can No One Hear Me?

I do not often post a blog twice in one week, but if I do not address this topic again, I may self-implode!

WHY CAN NO ONE HEAR ME???  I acknowledge that I now have to speak much slower, especially when I struggle for words and begin stuttering.  In addition, my voice is not as loud as it used to be but I would think that most people would view this as a good thing.
 
I experienced a prime example of this yesterday. One of the things I can no longer comfortably do is grocery shopping. I have written about this before. My husband has kindly taken on this task, even though it is quite foreign to him. This week, however, I decided to be brave and go along because I needed some things that I just couldn't explain to him. This was a Monday, and since Mondays and Tuesdays tend to be uncrowded at our store, off we went. We also went mid-afternoon when it is also less crowded.  Good plan, right?

All went well until we were looking for an item that was on sale, a new "healthier" cookie.  We looked everywhere we could think they might be... several times.  I wanted to just forget it, but husband asked an employee for assistance.  She searched all the same places and could not find them either... DUH!  She then called the manager in on it. So there we stand, all four of us in the middle of the aisle discussing this issue to death.  I kept trying to suggest somewhere else they might be.  I waited until nobody was talking, then started to say what I wanted. My mamma taught me right, after all.  I would get four or five words out and then someone else would start talking, totally ignoring the fact that I was speaking. This happened somewhere between four and six times, then I did my exasperated thing... shrugged my shoulders, threw my hands up in the air and walked away.

I don't know if one of the employees said something or my husband just found it necessary to explain. As I walked away, what I heard him say was, "She has dementia and is frustrated because she wants to say something." I wanted to scream, "No, I just want someone to listen."  So then, after he embarrassed me with his words, they stood there impatiently and listened, then totally dismissed what I had said. So now, there is a hole in the cookie aisle, because I dug one and crawled into it.  Oh, wait, maybe that was just what I wanted to do, in my mind.

I could go on and explain another example that happened today between just my husband and me. To make it short, he asked about something, I said it was just a spare.  He spoke another sentence or two, then said "So is this only a spare?"  Arrrgh! Right here, I will explain that my husband is the best caregiver and husband anyone could ever wish for and after 42 years of marriage, we are in it to stay.  We still love and laugh and we are pros at bickering and then laughing about it.  He is a good man, but even the good ones can frustrate us sometimes!

Several other FTD friends I communicate with online have suggested My husband and I both carry little business cards that are available through the Association for Frontotemporal Degeneration - www.theaftd.org//  Only problem is, to me anyway, is that they are just as in-your-face as what my husband said in the store. My project for tomorrow:  I have decided to make an attempt at making up some cards myself that don't make it sound like it is my fault that I have FTD.  I am probably more sensitive than I need to be, okay, no doubt about that, but as they say, "It is what it is!". That's the way I am, I can't change it, so we need to come up with ways to deal with it.

To all you caregivers out there, please do not dismiss what your loved one is trying to say.  Allow them to speak and truly listen to them.  Say something positive, even something simple as "Thanks for saying that." Even if you get gibberish, the feeling of belonging and having a purpose that he/she gets from it surely will be worth dealing with a little frustration on your part. Bottom line, PLEASE LISTEN!

Coping with Some Issues

FTD is confusing, even to the experts, often leading to misdiagnosis in fact.  One of the confusing things to me is sleep patterns, or lack thereof. In researching this topic, I find two extremely different complaints.

The first is, especially from a caregiver's prospective, the difficulty in establishing sleep patterns. This is vitally important for the sanity and health of the caregiver.  I have found no real explanation for this symptom, just possibilities.  The possibility that, due to lack of interest or the ability to do much, the person with FTD may tend to nap often, even  just a lot of tiny maps only lasting a few minutes, which can disrupt the sleep patterns.  One things I have noticed, just from reading caregiver comments here and there, is that part of the complaint is that the person with FTD and the caregiver don't have the same sleep patterns. Part of this could be explained by the "Sundowner Effect."  This is the effect that sundown has on anyone with dementia, extremely common with Alzheimer's.  Once darkness descends, the person with dementia begins getting quite agitated and it becomes more difficult to focus on anything. This leads them to go to bed because they don't know what else to do. I watched this pattern in my mother as she progressed through Alzheimer's, so I know for a fact that it happens. I would think it would be pretty difficult for most caregivers to end their day when the sun goes down.

Coping suggestions that I have heard about or read about are to keep a set schedule, exercise, control of diet and assure plenty of fluids. I find this almost amusing since those are all things most of us with FTD struggle with anyway... we sometimes have trouble swallowing food, and loss of bladder control over night is a big problem and drinking a lot of fluids before bedtime would not make that one easier to cope with!  One of the best suggestions that I have repeatedly seen is for the caregiver to find a family member or friend to "sit" with the loved one a couple nights a week so the caregiver doesn't get totally worn down.  Now, this makes sense to me!

The second sleep issue is just the opposite and the one I experience nightly. I seem to need more and more sleep. I am currently sleeping up to twelve hours a night and still need a big cup of coffee to get me going. This problem seems much easier to deal with by just getting enough sleep. One of the biggest problems we have with it is synching my schedule with my husband's. In the evenings, I am too hyper to go to bed early and end up not going to sleep until around midnight. That means that I don't get up until 11 a.m. or noon. It is pretty difficult to schedule appointments when you only have the afternoons available. Plus, my husband tries to keep his activities on the quiet side so that I can sleep in the mornings. All the "solutions" I am offered is more medication. That is one thing that I refuse to do. The only FTD-related medications I take are two for depression and anxiety, one of which also helps with sleep, and a very low dose of a sedative only when I get very agitated. I seem to use this when I need to ride anywhere in the car that takes longer than a few minutes.

Obviously, even though I have researched this topic pretty well, I don't have any answers. All the answers I find seem to me to just be common sense things that we are probably already doing anyway.

On to a totally unrelated topic... last week we attended a family reunion. I was so proud of myself, didn't say or do anything inappropriate and had a really good time visiting with cousins I rarely get to see. The problem came when it was time to leave. Even with my cane, I could not walk up the driveway to get to our car. My husband, God bless him, and I don't know how he instinctively knew to do this, walked right up behind me and walked. He held on to both of my arms from underneath, below the elbow, and moved his feet which seemed to trigger the impulse for my feet to move. We shuffled, but it worked. When my mom was in late stages of Alzheimer's she could not walk and one of the caregivers at the assisting living facility would walk backwards in front of her, holding her much the same way and would keep saying, "Come on now, Alice, let's dance!"  I wanted to include these experiences in my blog, hoping it might just help others.  Now, I DO wonder how many people at the picnic thought I was drunk!  That must have been some potent water I was drinking...