About the best thing I can say about this past week is that the week is over.
Today I am physically and mentally exhausted. Night before last, I actually had 8 hours of continuous sleep. I felt so good when I woke up yesterday that I did some cleaning that I had been putting off because it took a lot of energy and effort to do it. I exhausted myself, but my brain still felt more alert than usual. So, what did I do? I tackled our tax return. Bear in mind, I used to prepare tax returns as part of my occupation and our tax return is pretty darned simple now that we are both retired. Plus, the software I use remembers all the stuff from the year before, so all I really have to do is plug in a few numbers. Nothing at all was different this year, just the numbers. Uh-huh.
When I was working, we would allow one hour to do a return. With ours being so straight forward, it wouldn't have taken me that long. Yesterday, I spent more time than that just organizing the statements I needed. It was three categories and not very many in either category, 2, 2 and 4. Over an hour to sort 8 pages of paper! I am amazed that I actually got the return done at all. I am not very confident that it was done correctly and I suspect this might be the last year I can do it. I was, however, very happy that I was able to do it one more time.
And, I ramble on...
I am tired of offending people. I am tired of people taking offense at what I say or do, especially when it is a person who knows I have FTD and actually knows enough about the disease to realize that I have no filter between brain and mouth. Also known is the fact that I have no impulse control. The two pretty much go hand in hand and makes me a time bomb waiting to happen every time I open my mouth.
I recognize the fact that knowing these things is not the same as truly realizing what it means. I also recognize that some of the things that I spew forth can be hurtful. I also realize how much it hurts to be lashed out at about things I have said a long time ago and that are no longer in my memory bank. Perhaps if I am saying something hurtful, it would help to ask if it is me talking or my FTD talking. I suspect, though, after enough times of that, I would lose control. I don't think there is a solution to this problem.
I push myself to remember to control the impulses, but with no impulse control, it's hard to control them. Yes, I know how stupid that sounds, but I am trying to say that I just can't help it. Another problem is that what I say is not always what I am thinking about in my head.
I have begun to call this problem "word soup." The words are in there, but they are so mixed up that it is hard to distinguish the difference. I remember being embarrassed quite a few years ago, at an amusement park, when I went to ask a friend where the merry-go-round was. Instead I asked where the motorcycle was. Not much of a shock that all I got were blank stares. This instance was long enough ago, I do not really think it had anything to do with FTD, but who knows since they just don't know enough about this disease.
Often now, I will say something. Then after I have said it, I will think to myself that it just didn't sound right but I can't figure out what I said or even what I meant. It is getting scary since I know this will only get worse as time goes on.
I have learned to appreciate one of the worsening symptoms. I read on my Nook so that I can enlarge the print which reduces the problem of the double vision. I will go through the library of the books stored in the device and will see a book and think I didn't read it. I will read it again. There is this niggling feeling that I read it before, but I can't remember it. I have only been using my nook for 3 or 4 years, so I should be able to remember. I used to be able to talk about a book I had read more than 20 years ago. I guess the bright side would be that I can save money on buying books if I keep rereading the same ones.
I keep trying to see the bright side!
Sunday, February 28, 2016
Sunday, February 21, 2016
Not As Easy As It Used to Be
It is impossible to inform people often enough about the AFTD www.theaftd.org.
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
The AFTD (The Association fpr Frontotemporal Degeneration) does a lot of things for those with FTD, those who care for someone with it, or those whom just want to know more about it. In short, their mission is Research, Awareness, Support, Education and Advocacy.
To me, this is the first "go to" place when you or a loved one receives the dreaded diagnosis. It is also the place to go if you are having difficulty dealing with the disease.
One of the things the AFTD does is to organize and host an annual Education Conference. It is open to medical professionals, those who have FTD and their caretakers. You can read more about it by clicking on the link in the first paragraph.
This year, the conference is going to be held in Minneapolis, not close enough for a road trip, but only a 2-hour flight. Last year's flight to San Diego scared me too much to attempt. This year, though, I am going! My sister has agreed to accompany me, not only to keep me safe, but also to learn more about the disease. My husband, who refuses to fly anymore, gladly agreed to fund our trip. As much as I would like him to attend the conference, I am also sure that my sister will learn more than he would.
Even though it almost three months away, I am already getting excited. Many of the members of the online support group I visit daily will be there and I will be able to meet them, finally, in person. To meet them, as well as all the other people attending who have been diagnosed with FTD, is worth the trip in itself. Priceless, though, will be learning more about FTD and how to cope with it. I believe you can learn more from those who have FTD than any literature available. If they don't know it, they usually know when to direct you to find out. Of course, this is probably going to be the AFTD.
I am so excited that I insisted on making all the arrangements now! My husband left it to me to do rather than doing it for me because he felt certain I could handle it. He also knew that even if I didn't ask for help, he would know if I did, by how frustrated and angry I was acting.
A simple trip like this, back before FTD, I would arrange in an hour or so. Not anymore. This is my third day of dealing with it. I am proud of myself by the way I handled it. I spent the first day (when I say day, I'm talking about the 4-hour time span in the afternoon when I am more aware and with clearer thinking.) I did the actual online registration for the conference. So far, I only know of one mistake I made, but I am confident the AFTD will help me work through that. I also did some research on flights. We will have to take two flights each way... a local commuter jet that will get us to a major airport, then the flight to Minneapolis. I got as far as printing out lists of possible flights before my brain balked at doing anything more. Second day, I got back into the flights and actually made the reservations. I think I got everything right. I hope we don't get to the airport and find out we have to buy new tickets because I screwed something up! I was confident enough, that I went ahead and made the hotel reservation as well.
Today, the third day of preparation, I organized all my paperwork into a clear and workable order. I also contacted the hotel, via email, for information on getting from the airport to the hotel and back. I didn't want for us to have to rent a car and try to find our way around a new city. I would have been freaking out, and my poor sister would be trying to figure out the directions plus deal with me. Turns out there are plenty of shops and restaurants right across the road and the hotel shuttle van will transport us. Turns out that they do not offer a shuttle to/from the airport, but he gave me information on a private shuttle company that they recommend. I think I am going to go that way since it is half the cost of taking a cab.
Three days to do what I would have done in one hour... three days!!! Makes me feel a little pathetic, but much stronger is the feeling of pride I have from doing it! This should give you one idea of how FTD affects one's life.
Now all I have to worry about is if my luggage is too big or too heavy and what we can and cannot pack. Actually, I know at least my luggage is too big but don't know about my sister's. Then I need to figure out whether to buy a new bag or pay the fees to use one of the ones I have. Are you suspecting yet that I will obsessing for the next three months? Wish us all luck... me and both my caregivers, my sister and my husband. They will get sick and tired of hearing about it, I am sure!
Sunday, February 14, 2016
Love, (Sweet?) Love
First of all, today is Valentine's Day, so I wish all who read this a very happy Valentine's Day. If you are reading this after today, then I truly hope it was a happy day for you.
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Love... another of those topics that are difficult to talk about. I have mentioned it a few times here and there in other blog entries, but never dedicated an entire one to the subject.
There are so many different types of love... love for your spouse or sweetheart, love for your children, love for your friends and it goes on and on. What ruins any of those types of love? A spouse or sweetheart cheating or abusing, friends who repeatedly let you down when you need them or when they take advantage of you. Children? I am not sure the love for your child ever goes away. You may be extremely angry with them, disappointed by something they do or don't do, frustrated when they stray from the morals that you thought you had taught them... but love remains.
I will take a moment to brag a little. I have been married to the same wonderful man for 42 years now. I have a 35 year old daughter who is still the light of my life. Even when I go for six months, or even a year, without physically seeing her, that is a love that never dims. I have quite a few other family members with whom I feel a close relationship. Ones whom I know I can rely on. I am very lucky in the love department. I used to have a lot of close friends to count on and enjoy doing things together, but then FTD came along!
Ah, yes, wonderful FTD. Most of the time, the primary caregiver for those with FTD, as well as most other dementias, is the spouse or child. In most cases, it totally changes the relationship between the one with FTD and the caregiver/s. Take the spouse for instance. The two have walked side by side for years or decades. You have shared in all things pretty equally, gone through good times and bad times, relying on each other all along the way. Then, you start seeing strange things happening to your spouse, things that can't be explained away.
Quite often, in the early stages of FTD, some of the first signs are changes in personality. We lose our "filters" between brain and mouth. If we think it, we say it and, more often than not, see nothing wrong with what we said. We often become downright nasty, some become mean and abusive. At least in my case, I attribute a lot of my nastiness to the daily frustrations caused by FTD. Since the memory stays intact until later stages, I can remember all the things I used to be able to do that I can no longer do or at least not as well. How could this not be a strain on a spousal relationship? I find myself apologizing a lot. My husband and I work at it, talk about it and still take some time each day for hugs and comfort.
Speaking with caretakers, though, I have come to realize it becomes more and more difficult. As the spouse with FTD loses more and more abilities, the caregiver must take over. Things that used to be shared... finances, shopping, housework, sometimes child rearing, and so much more must now be done by the caretaking spouse. Odds are that the one with FTD can no longer work, so income becomes an issue. Sometimes they have to give up the home they have worked so hard to get, because they can no longer afford it. Then comes the stage when there are bathroom accidents to be cleaned up several times a day, as well as when self-feeding is no longer possible. How long can you maintain that love? The love definitely changes. I think the love is still there, or else you couldn't do all those things, but it is certainly not the intimate kind of love you had for so long.
A child being the primary caregiver, to me, just seems wrong. There are just somethings that a child should not have to do for a parent. I was a caregiver for a few family members with dementia, including my mother. It was heartbreaking, not only for me, but also for my mother. She didn't have much memory left, but when I was helping her shower, she knew this wasn't the way it was supposed to be. Once of the saddest moments of my life was the day I realized my mom had forgotten how to walk. Sometimes, though, it is only the child who is available to be the caretaker.
What I am trying to get across is that taking care of someone with dementia is not easy. It is an extremely difficult, frustrating and sometimes agonizing thing to have to do. My mother, after caring for her own mother with dementia in her home, made me promise that I would never, never, never move her into my home. While crying, she begged this of me and explained that she didn't want me to end up hating her. She obviously struggled with this while caring for her mom. Sad, isn't it?
Why am I going on and on about this, especially on Valentine's Day, a day devoted to love? I cannot imagine any act more full of love than being a caretaker for someone with dementia. To put up with the worries, the financial burden, the almost total loss of any "me" time? Now, that is love personified. That is why I constantly say, "GOD BLESS THE CAREGIVERS!"
Sunday, February 7, 2016
Just Pray Harder
I am finally going to tackle a subject that has been irritating me to no end. It is a challenge though. How do you talk about religion without offending anyone? I probably can't, so those of you who don't agree, please realize this will only express my feelings and I respect yours as well.
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
Recently, a friend who also has FTD was talking about an issue that has been with them for decades, but now with FTD, it is really bothering her. To put it behind her, she really feels she needs an apology from the one who wronged her. With the little I know of the problem, she certainly deserves one. I also am sure that she will never get one, which breaks my heart. She has been praying about it, but just can't seem to let it go.
I, also, had a violent act in my life that affected me greatly in the past. It has also been decades since this event and I had done a pretty good job of putting it behind me and rarely thought of it anymore. Then FTD hit!!! This event, along with a few other traumatic events, popped back into the forefront of my brain. I have tried praying, I have tried "giving it to God" to no avail. I can't say that I dwell on the subject, but I am back to the anger stage in trying to deal with it.
My friend and I have received the same advice from some others. We need to pray harder. We need to forgive. If we can't forgive, we aren't praying hard enough. Excuse me? How can anyone presume to know what conversations I have with God or how often I have those conversations? How can anyone, who has not been through the same kind of event, decide that they know how to deal with it? I know how to deal with it, I dealt with it many years ago, but now, thanks to FTD, I must deal with it again.
FTD is different from Alzheimer's in the fact that those with FTD tend to not lose their memory until the advanced stages. Those with Alzheimer's tend to lose their recent memory pretty early in the process. I have spent much time with Alzheimer's patients who are totally living in the past, buried in their memories. Because of this difference, it doesn't seem to make sense that past traumatic memories have resurfaced and just won't go back into the past where they belong. Then again, what does make sense about FTD?
For someone to be judgmental about this, and tell us that we need to forgive, let it go and pray more, in my mind is unconscionable. To begin with, I firmly believe that everyone has their own relationship with God and that no one should presume that they may pass judgement on mine. Also, when someone is struggling to deal with an issue like this, the last thing they need is to be judged by someone who knows nothing about the issue.
My faith brings me great comfort in dealing with FTD. It also brings me comfort in dealing with my past issues. That comfort comes from, through the help of God, being able to forgive myself and to rid myself of the unreasonable idea that it was my fault. I have also been able to forgive those who "trespassed against me." Unfortunately, with FTD, it comes down to the adage of "forgive but don't forget". It is stuck in my brain and won't move out. No amount of "praying harder" is going to make a difference. I don't believe you have to beg God. He knows what I truly need.
The hypocrites who think they can preach at me are useless to me. The people in my church, those who seem to think they know all about dementia and have decided (and made it clear to me) that there is nothing wrong with me because I don't have all the Alzheimer's symptoms, no longer have a place in my life. I forgive them, but I don't need to expose myself to that negativity. Positive things help me deal with FTD, not negative ones. The same goes for the people in my church who say they care about me, but when they think I cannot see, they roll their eyes or look at me with disdain.
These are the same people who ask why I don't attend church or the social functions of the church. The biggest reason I don't attend is the crowds. You put me with more than two or three people and I become extremely stressed and my symptoms worsen. For the past 3 or so years, I have been able to manage to attend a small group meeting within the church. However, after a few months of being totally ignored during the potluck dinner and the meeting, excluded from conversations and being looked at in a disdainful way (and, no, I don't imagine it), I can no longer handle the stress of that either. Like I said before, I need positive influences, not negative ones. What is interesting to me is that the so-called "pillars of the church" seem to be the worst offenders. I suspect they are also some of the ones who think I just need to pray harder...
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