The last four days, I have been feeling, more hurt and angry than ever before, but, even worse, that I do not matter to the person closest to me. With FTD, it is common to feel like you don’t matter. You can't do the things you used to do or, if you still can do something, it takes at least three times longer to get it done. You often lose the ability or authority to drive a vehicle, which kills a lot of spontaneity and eliminates a lot of choices in your day to day life. You have to wait until someone can and will drive you, hopefully to your first choice of where you want to go and not a substitute that suits the driver better. Every thing has to be scheduled well ahead of time... no spontaneity, as I said.
The biggie, though, in feeling like you don't matter is having your options taken away from you. Decisions are made without asking your input. Suggestions you make are dismissed. Your desires are no longer validated, but I will get more into this problem later in this blog entry.
The first place I, and others who have expressed the same situation, felt like I don't matter anymore is when my friends started ignoring me. Oh yes, promises are made... "We will get together soon". "I will call you". It gets to the point where I simply say, "Yes, that would be nice" knowing full well that I won't hear from them. When, on the rare instances that I do manage to get together with one, especially if it is in a restaurant, it isn't long before they start fidgeting in their seat, which tells me they don't want to be there. One guess that I have as to why is that they are afraid someone they know will see them sitting with someone who is stuttering and having difficulty speaking or who no longer has the best table manners. I will sit and pick apart my food, remake my sandwich to my liking, etc. With my lack of impulse control, I will often say the "wrong" or "politically correct" things, and often quite loudly. It comes down to the fact they are embarrassed to be seen with me. So, to all my friends and family who avoid me, I miss you, but I do understand. I forgive you. But... don't bother calling now, it's too late. What is interesting to me and others with FTD who have experienced the same thing, the worst offenders are those from our churches. I no longer attend church because of my inability to deal with crowds or control speaking out if I don't like or agree with something. I have, however tried to remain active in the women's group of our church. It gave me a place to socialize and keep in touch with those I considered my friends. I no longer attend those meetings either. The past few meetings, I have come away feeling like a social pariah. Don't get me wrong, not all of the members were like this, but enough that I will never go back. Enough who caused me to be totally embarrassed, worthless and unwanted, that it is not worth attending to see those who were still friendly.
Another thing that makes me feel like I don't matter, is when people don't hear me. I know I have blogged about his one before, but it is important. One of the things I have developed with FTD is sometimes non-stop chatter. So I do understand, somewhat, why people block out my talking. This becomes very hurtful as it makes me feel that they don't care what I have to say or that it's not worth listening or responding. I have reached the point that when they turn and say "Huh?" or some such thing, I just say "never mind" or "it wasn't important". Then the blame gets turned around on me somehow and I hear "No, no, don't do that to me, what did you say?. Me, not do that to you? Excuse me? You have just indicated to me that I am not worth listening to and you want me to repeat it?
This past week, we were facing a major life decision that would have a large effect on the rest of our lives. My daughter wanted us to move to the state where she lives so that she could help care for me and support her dad in doing so. She and I had both laid out our reasons why this would be a good and smart thing to do. We were even starting to do things that would be necessary before we moved, before we put our house on the market. Then, I was told that we must discuss this. The discussion involved in my being told why this would not work, why he did not want to move and all the negatives as he saw them. Then the discussion was over and he announced that "we" had made "our" decision. All the reasons why I wanted to move, primarily to spend quality time with our daughter while I still can, were rejected outright. I did not matter.
I don't like to blog about such personal situations, unless it is not obvious whom I am talking about, but I made an exception this time. Fortunately, I have a very strong, albeit small, support system and I will get through this disappointment. The anger and resentment will most likely stick around for a long, long time. I do not like that I no longer matter.
I hope this can be eye-opening to all of you who are caregivers to someone with FTD or to anyone who has someone in their lives who has FTD. Don't be quick to dismiss them. FTD is not like Alzheimer's, we still remember and we still are aware of what is going on around us. We still hurt and we should still matter! To those with FTD who read this, I hope it helps you to feel less alone, and that you DO matter!
Wednesday, September 30, 2015
Wednesday, September 23, 2015
Reactions to Stress
The past week has been one of the most stressful that I can remember. It would probably qualify as the most stressful if I was to not count the deaths of loved ones.
I am wanting to move from Pennsylvania to North Carolina to be with our daughter. My therapist is 100% behind this. She insists that those with FTD should spend as much quality time as possible with their loved ones before it is too late to enjoy them. My husband and I are both retired, so there is no reason why we could not do it. Except, he refuses. The reasons he gives me come across as extremely selfish. This is what is causing the extra stress, as if living with FTD is not stressful enough.
I have also discovered something. Stressful situations make my FTD symptoms worse. I have heard from quite a few others with FTD say the same thing. Fortunately, at least at this point, when the stress is lifted, after a couple days, the symptoms improve some. It doesn't even have to be a bad stress. As I wrote in my last blog entry, I experienced this following a baby shower that I had enjoyed immensely.
Now, with the stress of trying to convince my husband that moving is the right thing to do, it is like FTD has body slammed me repeatedly. When I am walking through our house, I am constantly banging into things such as furniture and wall edges. I touched up the paint on one of the wall edges, the one I hit constantly, a few days ago and now it is chipped again. I don't dare go anywhere without my cane, yet I still stumble while using it. I am going to have to admit it's not going away and purchase a walker. I don't want to, I don't want to. Please don't make me!
I am also having difficult swallowing more often. This can be downright scary, even at the level it is now. I do not even want to imagine what this is like when it gets more severe, which it will.
It's bad enough now that I am not sure my body will recover any from this round of stress.
So, I am super stressed, what can my loved ones do to help? The big one is that my husband could agree to move, of course. In the meantime, all the things that are difficult or make my life difficult are much worse and I need people to realize this. When I am trying to accomplish a task and am just a couple steps away from completing it, don't push me to the side and take over when you realize what I am doing. All that succeeds in doing is making me feel useless.
Don't argue with me and don't point out things that I did incorrectly. All that will accomplish is to cause me to blow up and say things I shouldn't.
My stuttering and difficulty finding words has gotten worse with the stress, so it takes longer for me to say things. Don't guess what I am going to say and try to finish my statement. Don't talk to others about me in front of me, even if you are trying to help. An example of this is to not explain to people who are new to me that I don't talk well and if I start stuttering just give me time. If I am having trouble, I will explain it myself. Somehow, that does not affect my dignity the way it does if you say it.
Do take the time to give positive reinforcement when I succeed at doing something beyond my norm. In the same vein, just because I am able to do something today, please don't assume that now I can do it all the time. My abilities change from day to day, even hour to hour or minute to minute. Don't say "But you were able to do this last week."
When I run to the sink to cough up food that I am unable to swallow, please don't ignore it. I realize it is quite gross, but you need to make sure I am okay. You don't need to stand there the whole time, but at least check in on me to know that I can breathe, just like you would a choking victim.
Of course, I am speaking in the first person here, not speaking for all those with FTD. We all have different symptoms that progress at different rates. I figure, though, that this at least gives you some idea of how to interact with someone living with FTD.
While I am on the subject, do not try to compare one case of FTD to another. It doesn't work that way. There are many variations of FTD and even more combinations of those variables. Like I have heard repeatedly, "If you have seen one case of FTD, you have seen one case of FTD."
I am wanting to move from Pennsylvania to North Carolina to be with our daughter. My therapist is 100% behind this. She insists that those with FTD should spend as much quality time as possible with their loved ones before it is too late to enjoy them. My husband and I are both retired, so there is no reason why we could not do it. Except, he refuses. The reasons he gives me come across as extremely selfish. This is what is causing the extra stress, as if living with FTD is not stressful enough.
I have also discovered something. Stressful situations make my FTD symptoms worse. I have heard from quite a few others with FTD say the same thing. Fortunately, at least at this point, when the stress is lifted, after a couple days, the symptoms improve some. It doesn't even have to be a bad stress. As I wrote in my last blog entry, I experienced this following a baby shower that I had enjoyed immensely.
Now, with the stress of trying to convince my husband that moving is the right thing to do, it is like FTD has body slammed me repeatedly. When I am walking through our house, I am constantly banging into things such as furniture and wall edges. I touched up the paint on one of the wall edges, the one I hit constantly, a few days ago and now it is chipped again. I don't dare go anywhere without my cane, yet I still stumble while using it. I am going to have to admit it's not going away and purchase a walker. I don't want to, I don't want to. Please don't make me!
I am also having difficult swallowing more often. This can be downright scary, even at the level it is now. I do not even want to imagine what this is like when it gets more severe, which it will.
It's bad enough now that I am not sure my body will recover any from this round of stress.
So, I am super stressed, what can my loved ones do to help? The big one is that my husband could agree to move, of course. In the meantime, all the things that are difficult or make my life difficult are much worse and I need people to realize this. When I am trying to accomplish a task and am just a couple steps away from completing it, don't push me to the side and take over when you realize what I am doing. All that succeeds in doing is making me feel useless.
Don't argue with me and don't point out things that I did incorrectly. All that will accomplish is to cause me to blow up and say things I shouldn't.
My stuttering and difficulty finding words has gotten worse with the stress, so it takes longer for me to say things. Don't guess what I am going to say and try to finish my statement. Don't talk to others about me in front of me, even if you are trying to help. An example of this is to not explain to people who are new to me that I don't talk well and if I start stuttering just give me time. If I am having trouble, I will explain it myself. Somehow, that does not affect my dignity the way it does if you say it.
Do take the time to give positive reinforcement when I succeed at doing something beyond my norm. In the same vein, just because I am able to do something today, please don't assume that now I can do it all the time. My abilities change from day to day, even hour to hour or minute to minute. Don't say "But you were able to do this last week."
When I run to the sink to cough up food that I am unable to swallow, please don't ignore it. I realize it is quite gross, but you need to make sure I am okay. You don't need to stand there the whole time, but at least check in on me to know that I can breathe, just like you would a choking victim.
Of course, I am speaking in the first person here, not speaking for all those with FTD. We all have different symptoms that progress at different rates. I figure, though, that this at least gives you some idea of how to interact with someone living with FTD.
While I am on the subject, do not try to compare one case of FTD to another. It doesn't work that way. There are many variations of FTD and even more combinations of those variables. Like I have heard repeatedly, "If you have seen one case of FTD, you have seen one case of FTD."
Tuesday, September 15, 2015
Worth the Price Sometimes
Over this past weekend I had the joy of attending a baby shower for a very dear friend. Her family was among the very first people we met and befriended when we moved here eleven years ago and we have all been through a lot together.
When I received the invitation a few weeks ago, my first thoughts were:
How will I get there, can't drive and my husband doesn't like going to strange places?
Would I be able to tolerate the crowd?
What if I started to panic and needed to get out of there?
What if I do something stupid, would I embarrass myself or my friends? I could fall or spill my food or say the wrong things (my verbal filter is just totally gone these days)?
I'm sure I have mentioned how much I hate asking for things? I still think I should be self-sufficient in all ways .I was determined to attend, no matter what. so I acturally contacted a friend of the mom-to-be whom I knew would be invited. I had done a lot of favors through the past years for her and since she would practically drive right by my house, I figured it would not be imposing at all. I got several excuses in response and gave up on her. Then I remembered a family member of the mom-to-be. We haven't been as close as we once were because the mom-to-be's family had moved a half hour away from us so we didn't attend all of their big get togethers anymore. But I remembered her offering to give me a ticket and a ride to her daughter's dance recital in June. Even though I don't see them much, I have kept in touch and have supported her kids' fundraisers and such.
When I asked, there was no hesitation whatsoever so the ride was taken care of. And the ride was fun, spent playing with her kids. Somehow, she knew to grab the table on the edge of the room and gave me the corner seat so I wouldn't feel closed in. How she knew this, I have no idea.
I decided to lump all the other questions together and say "So what if I do?" These are good friends and would accept me even if I did all of the things I was afraid of. I truly was proud of myself and my determination. The shower is one of the best I have been to in a long time. I am one of those silly people who love baby showers, even the silly games that are inevitably played. I even won a prize! I lasted the whole four hours with no problem. I was even smart enough to not try to carry a bowl of soup or open cups of drinks.
Then came Monday, the day after. My legs would not work. The signal from the brain was just not getting to the legs. Even using my cane, I was stumbling and struggling. We had an out-of-town doctor appointment, so I couldn't just take it easy. My speech was a mess. I think my stuttering was worse than it has ever been and my "FTD headache" was nearly unbearable. Fortunately, all the staff at this doctor's office have gotten to know me and love me, so I didn't worry about embarrassing myself there.
I kept trying to figure out "Why today?" towards the end of the day. Then I had that "Duh" moment. I figured out that my brain was struggling because of the stress of the day before. Even though I had such a good time, it was still stressful. I had worried every time I got up to walk somewhere, every time I had to have a conversation with anyone and all the other worries I have mentioned.
Guess what? I don't care one iota that I had to deal with the struggles on Monday, even at the risk of embarrassing myself, which I did do when we stopped at a convenience store on the way. This day of struggling was a cost I would pay over and over in order to have the good time I had at the shower. Getting to visit with people I haven't seen in a while and celebrating with the mom-to-be... PRICELESS! When you know you have a terminal disease, it (at least to me) becomes important to spend time with loved ones because each time, you don't know if it will be the last.
Today is Tuesday, two days after the shower and, physically, I am back to the place I was before Sunday. You may be reading this post and are thinking "Wow, she is really making too big a deal out of attending a baby shower." When you have FTD, everything becomes a big deal and a huge struggle, so I when I make it through one, it is a huge deal to me!
When I received the invitation a few weeks ago, my first thoughts were:
How will I get there, can't drive and my husband doesn't like going to strange places?
Would I be able to tolerate the crowd?
What if I started to panic and needed to get out of there?
What if I do something stupid, would I embarrass myself or my friends? I could fall or spill my food or say the wrong things (my verbal filter is just totally gone these days)?
I'm sure I have mentioned how much I hate asking for things? I still think I should be self-sufficient in all ways .I was determined to attend, no matter what. so I acturally contacted a friend of the mom-to-be whom I knew would be invited. I had done a lot of favors through the past years for her and since she would practically drive right by my house, I figured it would not be imposing at all. I got several excuses in response and gave up on her. Then I remembered a family member of the mom-to-be. We haven't been as close as we once were because the mom-to-be's family had moved a half hour away from us so we didn't attend all of their big get togethers anymore. But I remembered her offering to give me a ticket and a ride to her daughter's dance recital in June. Even though I don't see them much, I have kept in touch and have supported her kids' fundraisers and such.
When I asked, there was no hesitation whatsoever so the ride was taken care of. And the ride was fun, spent playing with her kids. Somehow, she knew to grab the table on the edge of the room and gave me the corner seat so I wouldn't feel closed in. How she knew this, I have no idea.
I decided to lump all the other questions together and say "So what if I do?" These are good friends and would accept me even if I did all of the things I was afraid of. I truly was proud of myself and my determination. The shower is one of the best I have been to in a long time. I am one of those silly people who love baby showers, even the silly games that are inevitably played. I even won a prize! I lasted the whole four hours with no problem. I was even smart enough to not try to carry a bowl of soup or open cups of drinks.
Then came Monday, the day after. My legs would not work. The signal from the brain was just not getting to the legs. Even using my cane, I was stumbling and struggling. We had an out-of-town doctor appointment, so I couldn't just take it easy. My speech was a mess. I think my stuttering was worse than it has ever been and my "FTD headache" was nearly unbearable. Fortunately, all the staff at this doctor's office have gotten to know me and love me, so I didn't worry about embarrassing myself there.
I kept trying to figure out "Why today?" towards the end of the day. Then I had that "Duh" moment. I figured out that my brain was struggling because of the stress of the day before. Even though I had such a good time, it was still stressful. I had worried every time I got up to walk somewhere, every time I had to have a conversation with anyone and all the other worries I have mentioned.
Guess what? I don't care one iota that I had to deal with the struggles on Monday, even at the risk of embarrassing myself, which I did do when we stopped at a convenience store on the way. This day of struggling was a cost I would pay over and over in order to have the good time I had at the shower. Getting to visit with people I haven't seen in a while and celebrating with the mom-to-be... PRICELESS! When you know you have a terminal disease, it (at least to me) becomes important to spend time with loved ones because each time, you don't know if it will be the last.
Today is Tuesday, two days after the shower and, physically, I am back to the place I was before Sunday. You may be reading this post and are thinking "Wow, she is really making too big a deal out of attending a baby shower." When you have FTD, everything becomes a big deal and a huge struggle, so I when I make it through one, it is a huge deal to me!
Saturday, September 5, 2015
Un - "Comfortably Numb"
I describe myself as "emotionally numb" more and more these days. Much of that is just a condition of the FTD. The worst part of that is that, more often than not, I feel as though I just need to have a good cry and get it all out. Unfortunately, FTD does not allow me to do that due to it killing off most of the empathy I used to have.
This morning, though, I realized that in addition to being numb, I also feel like an empty shell. Almost all decision making power has been taken away from me, aside from deciding what to fix for dinner. I haven't been allowed to drive for about five years now. Until that privilege is taken from you, there is no way of understanding what that does to you. It is almost like part of your being has been ripped away. Don't get me wrong, I realize that I have no business driving. I get lost constantly and narrowly escaped causing some pretty severe accidents the final year of my driving. It is just that it steals much of the spontaneity from my life. I can no longer hop in the car and run to the store if I need something. If I'm bored, I can't just hop in the car and go visit someone. I must schedule all of my appointments and activities around someone else's schedule so that I can get a ride. For every thing not within the walls of our home, I am always dependent on someone else. Having always been a fiercely independent person, it is really tough to accept. I have missed so many events... showers, weddings, parties, funerals... and it hurts to let people down.
Sometimes it is mostly me who gets hurt by this. We were supposed to go on a vacation next month to Myrtle Beach SC and our daughter was going to meet us there for the week. I haven't seen her since Christmas, so it's been a long nine months. Unfortunately, my husband decided he did not want to go. It used to be a common occurrence for him to not be able to make a family trip, so my daughter and I got used to just packing up and taking off on our own. Now that she and I live a few states apart, it makes it much more difficult to do. Bottom line, vacation is a no-go. So, I wait until Christmas time again to see our daughter. Somehow, once a year is not nearly enough. Yes, I could find someone else to join us and do the driving in exchange for a free trip to the beach, but that totally defeats the purpose of having some quality family time with just the three of us.
This isn't just a case of me pouting because I don't get to go on vacation again this year, just like the past few years. It is more that this disease does not come with a calendar. I have no idea if it will end my life within the next year or in five years. Most of the research that I have seen says, 5 -10 years after diagnosis. I was diagnosed about five years ago, so as more and more symptoms rear their ugly heads or others worsen, it forces me to face reality. For me, it makes me want to do things like see family as often as I can. For instance, this summer I was able to get together with cousins from both sides of my family. This doesn't happen often because we are all spread across the country now. It meant so much to me to be able to do this. Many of those that I know with FTD actually have "bucket lists" of things that they want to do before it is too late. I have one thing on mine: spend as much time as I can with family. Along with that, I do include moving to North Carolina to be near my daughter. But, all these things depend on someone else making the decisions needed to do these things.
Bottom line, I am tired of being empty and numb. Song lyrics keep popping into my head: Comfortably Numb which then leads into Should I stay or should I go now...
I never would have envisioned these words to describe my life, not in a million years, until FTD came to call...
This morning, though, I realized that in addition to being numb, I also feel like an empty shell. Almost all decision making power has been taken away from me, aside from deciding what to fix for dinner. I haven't been allowed to drive for about five years now. Until that privilege is taken from you, there is no way of understanding what that does to you. It is almost like part of your being has been ripped away. Don't get me wrong, I realize that I have no business driving. I get lost constantly and narrowly escaped causing some pretty severe accidents the final year of my driving. It is just that it steals much of the spontaneity from my life. I can no longer hop in the car and run to the store if I need something. If I'm bored, I can't just hop in the car and go visit someone. I must schedule all of my appointments and activities around someone else's schedule so that I can get a ride. For every thing not within the walls of our home, I am always dependent on someone else. Having always been a fiercely independent person, it is really tough to accept. I have missed so many events... showers, weddings, parties, funerals... and it hurts to let people down.
Sometimes it is mostly me who gets hurt by this. We were supposed to go on a vacation next month to Myrtle Beach SC and our daughter was going to meet us there for the week. I haven't seen her since Christmas, so it's been a long nine months. Unfortunately, my husband decided he did not want to go. It used to be a common occurrence for him to not be able to make a family trip, so my daughter and I got used to just packing up and taking off on our own. Now that she and I live a few states apart, it makes it much more difficult to do. Bottom line, vacation is a no-go. So, I wait until Christmas time again to see our daughter. Somehow, once a year is not nearly enough. Yes, I could find someone else to join us and do the driving in exchange for a free trip to the beach, but that totally defeats the purpose of having some quality family time with just the three of us.
This isn't just a case of me pouting because I don't get to go on vacation again this year, just like the past few years. It is more that this disease does not come with a calendar. I have no idea if it will end my life within the next year or in five years. Most of the research that I have seen says, 5 -10 years after diagnosis. I was diagnosed about five years ago, so as more and more symptoms rear their ugly heads or others worsen, it forces me to face reality. For me, it makes me want to do things like see family as often as I can. For instance, this summer I was able to get together with cousins from both sides of my family. This doesn't happen often because we are all spread across the country now. It meant so much to me to be able to do this. Many of those that I know with FTD actually have "bucket lists" of things that they want to do before it is too late. I have one thing on mine: spend as much time as I can with family. Along with that, I do include moving to North Carolina to be near my daughter. But, all these things depend on someone else making the decisions needed to do these things.
Bottom line, I am tired of being empty and numb. Song lyrics keep popping into my head: Comfortably Numb which then leads into Should I stay or should I go now...
I never would have envisioned these words to describe my life, not in a million years, until FTD came to call...
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