I sat down to write this blog because, even though it taxes my brain at times, my body needs to rest. Both are exhausted but this will use my brain differently than it has been the past few days.
When my husband died back in November, I promised myself that I would not make any important decisions for six months. Here it is, only three, and I have made a huge one. If you don't know, I live in beautiful Central Pennsylvania very close to where I grew up. My adult daughter is firmly ensconced in the southern part of North Carolina. She has a great job and quite a few friends. I would never ask her to move back here.
Instead, I am taking the leap and moving down there. I met with a realtor last week and will activate the listing in two weeks if I get everything spruced up by then. This is a monumental task for anyone, much less someone with FTD. I am blessed to have a niece and her fiance who are always willing to lend a hand even during the times when all I can do is watch them work. I also have my sister and brother in law who will do anything I ask of them.
They are the four whom I will miss the most when I move. There is only a small handful of others. I do not count those who say to call them anytime for help. Oops, they are busy that day or Aunt Susie's granddaughters's friend's next door neighbor needs them to help them that day. They are also the same friends and family who never call, visit or invite me to join in family functions.
Anyone with FTD understands what I am saying. Because these people are uncomfortable with my new normal, they are more comfortable avoiding contact. I can only assume that if they don't see me, that I and my FTD don't exist.
I know making this move is risky in that all the work, planning and confusion could cause my FTD to worsen. So this is a conscious decision to take the risk that will help me more in the end. In the meantime, the local Rescue Mission loves me. They have come three times already with their large van to take things to their thrift store and I am well into the fourth load. My trash man may not though. One side of my double garage is filled half way back from the door with things to go out. I guess he really does love me because he told me not to worry, just give him a call when I am done or nearly so, and he and his guys will come pick it up right from the garage.
I have been packing some things already, especially in my husband's dungeon, pack rat haven or whatever you want to call what he insisted was his office. I am having it brightened up with some paint so I had to pack a lot of things to make room for the painter. However, I do not plan to do it all myself. I will hire packers to do what I don't get around to doing. I am trying to pace myself and not do too much in one day.
I present you with a word of advice. Sort through all your stuff now while you still can. Possibly even mark who gets sentimental or valuable items to avoid family feuds later. Doing a little each day should not exhaust you too much.
Enough about all that. I am pacing myself but, yes, I do realize I will exhaust myself.
As I mentioned earlier, my husband died on Nov. 18th, 2019, from complications from Alzheimer's Disease. His choice was to have his body donated to science and, once we were not wrapped up in mourning any longer, to return to his hometown in Illinois and have a Celebration of Life. He was surely thinking of making it as easy for me as possible. He also had not cultivated any friends since we moved here and joked that no one would show up anyway. Many were shocked that I had no viewing or funeral service but I honored his wishes.
My daughter and I are trying to plan this celebration for a weekend in May, working three states apart and three states to his hometown. Last Fall, I purchased a notebook with erasable marker pages. For anyone who is not super-organized, it is a great help. I started using it when my husband began getting hospice support here at home. Next was for all the paperwork I needed to complete. There was a long list of that! I simply erase as I accomplish a task. I am using it again for the celebration and for the move. It may just be tricking me into feeling organized, but I'll take even that. Before you ask, you can see them online at The Grommet. They are not cheap, but well worth the price and should last forever.
Forgive me because my mind is just spinning and where it stops, no one knows. I sure don't. I learned a huge lesson yesterday and today. On Facebook, I re-posted what I thought was a hysterical political meme. Mind you, I usually avoid any political posting but this made me really laugh. In my mind, it was making fun of every political entity, not just one candidate. This meme did not even mention a particular candidate. Holy crap! I was attacked. One person assumed that I was an uneducated, unaware idiot and suggested I find a child who could educate me. I will never, ever post another even remotely political item on Facebook. Since I have had FTD, I have the most horrible of all paranoia and I take everything seriously and to heart. I don't understand sarcasm either, but I do know that was not what this attack was.
I can survive moving, dealing with selling the house, attending conference and planning my husband's Celebration of Life. I cannot survive being attacked by others who happen to disagree with me. They can disagree all they want and even post that they do but attacking someone so viciously is nearly unforgivable. I will survive though because I recognize that there are a huge gambit of opinions out there and everyone is entitled to theirs, even me, the uneducated one who needs to be taught by a child.
Maybe I will ask the 3-year old boy I am going to meet tomorrow. I am betting that what I will learn is that we should respect everyone and their opinion. That we can have opposing views of each other civilly and still respect the other because we are all in this together.
Hmmm..., this could be said about all of us with FTD as well, couldn't it?
Saturday, February 22, 2020
Sunday, February 9, 2020
Zeroes and Heroes or Somewhere in Between
Many years ago, I took a few classes on psychology. I wasn't pursuing a degree nor a career in the field of psychology, I was just fascinated by it all. I don't remember much from those courses, but there is one lecture that has stuck with me all this time.
The lecture began about how some people rate others on a scale of 0-10. It is pretty much self-explanatory. Someone you despise would be a zero. Someone you idolize would be a 10. Unfortunately, it didn't stop there. Apparently there are many who rate others only as a zero or a ten. I wasn't quite that bad, mine was more of a 0-3 to 7-10 scale.
I had always sought out the company of two different groups of people: those who I could help and those who could help me. Thankfully, this happened in my early 20's and I started seeing the value of everyone and how narrow-minded I had been. This greatly helped me in my career and in my private life as well.
What on earth does this have to do with FTD? The answer is simple. There are many people who view all of those with FTD as a "zero" and view all caregivers as a "10". The reverse is true as well.
At the risk of offending caregivers, I will start there. I have heard and read many caregiver comments about how horrible their FTD'er is. How they don't do anything to help around the house, how they wet the bed or poop in their pants, how they only want to eat sweets, how they have gained weight and how rude and unappreciative they are. This is only a small fraction of the complaints.
I am going to keep my response to that simple. These things are not a conscious decision for the one with FTD. It is a compulsion they cannot control, especially for the poor diet choices. The FTD brain craves sugar and carbohydrates. I read somewhere that the brain is fed by sugars and it realizes it needs help so it demands them. I think I am remembering it correctly. It makes sense to me, but I won't swear it is accurate.
FTD'ers don't help around the house, at least not properly, because they can't. You should see the basket of laundry I just folded. I cannot fold a shirt. I cannot even fold my underwear. Forget a fitted sheet and even the towels are all catty-wompus. That means messy in case you don't understand Cindy-speak. Telling me to vacuum the floor may end up with me vacuuming the kitchen or not remembering where the vacuum even is. Add to that the fact that every seemingly small task we do exhausts us. The more exhausted we are, the less our brains work.
Trust me, no one with FTD wakes up in the middle of the night and thinks that it is too much trouble to go to the bathroom so they wet the bed. Nor do they deliberately dirty their pants during the day. Our bodies and brains do not always communicate. Our body needs to move its bowels but the brain doesn't realize it until it is too late.
Our sense of taste changes with FTD. What we used to like to eat may not taste good anymore and some days it may be that nothing tastes good. Well, except for the sweets. Adding a little agave nectar or honey, even sugar, to the food may even help with that problem.
Before you get angry and quit reading, I will switch to the vice-versa. Caregivers are not all evil, screaming lunatics either. They often break down from frustration. They may even scream. This is not because they are evil or they are bad caregivers, it is that they do not understand what is causing the FTD'er to act the way they are which leads to total frustration. They are also exhausted. In most cases, they must now do all they used to do plus all that the FTD'er used to do.
Caregivers also realize that their role will not get any easier as the FTD progresses. People tell them to just ask for help. So easy to say to someone, not so easy to obtain. It's not easy to ask and the excuses received in response are endless. I must also mention that having someone else pitch hitting is not always welcomed by the FTD'er who can become uncooperative.
Those of us with FTD have to remember that it is not always possible to have meals on the table right when we are ready to eat. Those meals may not be of top quality sometimes due to lack of time and energy. It would help, also, if we could remember that we just asked for the same thing five minutes ago!
Yes, I know, I have written about these things before. I have especially written about the things that stress both the FTD'er and the caregiver. I just had to reiterate a lot of these things to try to get across the fact that NONE of us is perfect. The reverse applies as well. None of us deliberately tries makes the other's life miserable.
However, if you think about it, none of us was a zero and probably very few were 10's prior to the invasion of FTD. None of us was without faults but I am sure that all of us had many positive sides. Life is not zero or a hero. It does not matter how good of a caregiver you are, you are not a 10. Though, if I am honest, I can think of a couple who are close to a 9.9. The best part is that they don't even realize how good they are.
For the FTD'ers, none of us are a 10, probably not even close to it. Many of us do our best to be helpful and not to complain (too much anyway) and be appreciative of all the caregivers do for us. At the risk of sounding like a cliche, we need to meet in the middle of the road. If we both manage to be a 5, perhaps we can make a 10 between us.
I must close by telling you what inspired this post. During my husband's last days, I kept reassuring him and telling him it was okay to go, that I would be fine. Finally, my helper told me that "You know he doesn't hear you, you have not whispered to him in years." Uh, I admit she was right. When I went back into his room, I spoke to him in my normal not so whispering voice the exact same thing I had been telling him all along. He actually opened his eyes and I do believe he heard me. Later that evening when I gave him a kiss, which I did a lot, he responded and kissed me back. I bet you figured out the end to this story. That was the night he passed on. Neither one of us was perfect. Not when he was serving as my caregiver, nor when I was his. What we did do, was always take a few minutes each evening to remind the other how much we still loved and shared. I will treasure that kiss forever. It is at least tied with our first kiss, if not better.
Please try to take those few minutes everyday to reconnect. It may make a big difference. But don't whisper!
The lecture began about how some people rate others on a scale of 0-10. It is pretty much self-explanatory. Someone you despise would be a zero. Someone you idolize would be a 10. Unfortunately, it didn't stop there. Apparently there are many who rate others only as a zero or a ten. I wasn't quite that bad, mine was more of a 0-3 to 7-10 scale.
I had always sought out the company of two different groups of people: those who I could help and those who could help me. Thankfully, this happened in my early 20's and I started seeing the value of everyone and how narrow-minded I had been. This greatly helped me in my career and in my private life as well.
What on earth does this have to do with FTD? The answer is simple. There are many people who view all of those with FTD as a "zero" and view all caregivers as a "10". The reverse is true as well.
At the risk of offending caregivers, I will start there. I have heard and read many caregiver comments about how horrible their FTD'er is. How they don't do anything to help around the house, how they wet the bed or poop in their pants, how they only want to eat sweets, how they have gained weight and how rude and unappreciative they are. This is only a small fraction of the complaints.
I am going to keep my response to that simple. These things are not a conscious decision for the one with FTD. It is a compulsion they cannot control, especially for the poor diet choices. The FTD brain craves sugar and carbohydrates. I read somewhere that the brain is fed by sugars and it realizes it needs help so it demands them. I think I am remembering it correctly. It makes sense to me, but I won't swear it is accurate.
FTD'ers don't help around the house, at least not properly, because they can't. You should see the basket of laundry I just folded. I cannot fold a shirt. I cannot even fold my underwear. Forget a fitted sheet and even the towels are all catty-wompus. That means messy in case you don't understand Cindy-speak. Telling me to vacuum the floor may end up with me vacuuming the kitchen or not remembering where the vacuum even is. Add to that the fact that every seemingly small task we do exhausts us. The more exhausted we are, the less our brains work.
Trust me, no one with FTD wakes up in the middle of the night and thinks that it is too much trouble to go to the bathroom so they wet the bed. Nor do they deliberately dirty their pants during the day. Our bodies and brains do not always communicate. Our body needs to move its bowels but the brain doesn't realize it until it is too late.
Our sense of taste changes with FTD. What we used to like to eat may not taste good anymore and some days it may be that nothing tastes good. Well, except for the sweets. Adding a little agave nectar or honey, even sugar, to the food may even help with that problem.
Before you get angry and quit reading, I will switch to the vice-versa. Caregivers are not all evil, screaming lunatics either. They often break down from frustration. They may even scream. This is not because they are evil or they are bad caregivers, it is that they do not understand what is causing the FTD'er to act the way they are which leads to total frustration. They are also exhausted. In most cases, they must now do all they used to do plus all that the FTD'er used to do.
Caregivers also realize that their role will not get any easier as the FTD progresses. People tell them to just ask for help. So easy to say to someone, not so easy to obtain. It's not easy to ask and the excuses received in response are endless. I must also mention that having someone else pitch hitting is not always welcomed by the FTD'er who can become uncooperative.
Those of us with FTD have to remember that it is not always possible to have meals on the table right when we are ready to eat. Those meals may not be of top quality sometimes due to lack of time and energy. It would help, also, if we could remember that we just asked for the same thing five minutes ago!
Yes, I know, I have written about these things before. I have especially written about the things that stress both the FTD'er and the caregiver. I just had to reiterate a lot of these things to try to get across the fact that NONE of us is perfect. The reverse applies as well. None of us deliberately tries makes the other's life miserable.
However, if you think about it, none of us was a zero and probably very few were 10's prior to the invasion of FTD. None of us was without faults but I am sure that all of us had many positive sides. Life is not zero or a hero. It does not matter how good of a caregiver you are, you are not a 10. Though, if I am honest, I can think of a couple who are close to a 9.9. The best part is that they don't even realize how good they are.
For the FTD'ers, none of us are a 10, probably not even close to it. Many of us do our best to be helpful and not to complain (too much anyway) and be appreciative of all the caregivers do for us. At the risk of sounding like a cliche, we need to meet in the middle of the road. If we both manage to be a 5, perhaps we can make a 10 between us.
I must close by telling you what inspired this post. During my husband's last days, I kept reassuring him and telling him it was okay to go, that I would be fine. Finally, my helper told me that "You know he doesn't hear you, you have not whispered to him in years." Uh, I admit she was right. When I went back into his room, I spoke to him in my normal not so whispering voice the exact same thing I had been telling him all along. He actually opened his eyes and I do believe he heard me. Later that evening when I gave him a kiss, which I did a lot, he responded and kissed me back. I bet you figured out the end to this story. That was the night he passed on. Neither one of us was perfect. Not when he was serving as my caregiver, nor when I was his. What we did do, was always take a few minutes each evening to remind the other how much we still loved and shared. I will treasure that kiss forever. It is at least tied with our first kiss, if not better.
Please try to take those few minutes everyday to reconnect. It may make a big difference. But don't whisper!
Sunday, February 2, 2020
Missing Family and Friends
As well as I know I have FTD, I also know that the day will come that I won't have any friends or family remaining who will still want to deal with me.
The first reason is one I have written about so many times. For whatever reason, when someone hears a person has FTD they start avoiding them. I have no idea whether it is that knowing someone they love has dementia makes them afraid to face their own mortality. Perhaps it is because they don't want to be saddled with any responsibility of taking care of someone with dementia. Maybe they think it is true that everyone with dementia is the same and does not realize what is going on, so why bother to visit since they won't remember anyway. I don't think any of us will even solve that conundrum and we will never understand why.
Then comes the difficult reason to admit. I fear that one day I will offend enough people to the point that no one will even love me anymore. Yesterday was an excellent example.
I had offered to pay a couple family member to come to my house and help me go through more of my late husband's "things" and there are a lot of them. They agreed to be here at noon. When they finally arrived at 2:30, my FTD had me quite wound up. Me, I started working on things at the noon hour when I expected them. Now, I must add, they did send a message that they would be late but, of course, my phone was upstairs so I didn't read it until after they had arrived.
Fortunately I love these kids (actually 20 somethings) so much that I kept forcing myself to calm down and kept reminding myself that some people actually have lives that don't include helping me clean out the basement and garage. When they did arrive, without much of a howdy do, I assigned them tasks. I was very glad that I had calmed myself down because they worked quite hard and I have to say that my garage has never looked so clean! Not even when we moved in!
You all probably know already how much any activity can exhaust someone with FTD. If I cook dinner, I am often too exhausted afterward to even eat. I hate it! So you know that working pretty much non-stop going through everything in a file cabinet and an entire closet where my husband stored everything he didn't know where else to put it. It is made even worse because of the emotions involved with going through his things. Around 5:00 or so, a dear friend came by. He is an old family friend so I knew his coming by would not bother the kids and we had not seen each other since weeks before Christmas. This is when the trouble started.
He walked in and a cloud of cologne hit me. He always wears cologne, but this was a different one and it immediately attacked my allergies. Part of the problem was could have been that after breathing dust and probably mold for five hours, my allergies were already kicked into high gear. However, I was exhausted from working so hard for a few hours so reason was not going to be part of my response.
Without even thinking, I asked him, "What did you do, take a bath in cologne?" He snapped back at me, "Not exactly and there's nothing you can do about it now." Ohh, them's fightin' words pardner. I said something to the effect that I could send him upstairs to wash it off or he could go home, take a shower and put on different clothes.
His quick response was "Go ahead and try."
I looked at him for a bit and remembered how long he has been a friend so I choked back the next words my exhaustion and FTD were wanting me to say. There were more unpleasant moments, like when he looked at a couple plastic totes that I had very carefully packed using bubble wrap and lots of packing paper. He said "What the hell is that? It looks like boxes of garbage. I explained it was just the packing paper he was seeing and then he said "It still looks like garbage to me." I took a deep breath and explained that they were two totes packed with expensive dishes that our aunt had passed on to my daughter and that they are in no way garbage. He had to do it though. He said one more time that they still look like garbage.
At that point, I so much wanted to ask him to leave and never come back but I took a couple more deep breaths and let it go. I knew I did not dare open my mouth or this 50-year friendship would be over. Instead, I said that I thought it was past time for us to knock off for the day and invited the kids along to our planned dinner out so I would have a buffer.
It helped a lot. The kids are quite entertaining and I talked mostly with them, including him at times. When he drove me home and came in to visit a bit, I was very careful and kept things light. As exhausted as I was and irritated to boot, I did not trust myself at all.
I can see that, as my FTD progresses, the more I am going to offend people, perhaps not even realizing it when I do. Even though I have explained to people, including him, many times about the symptoms of FTD and how they affect my words and actions, they just do not get it. They think they do and say they do, even to the point of reminding me that I have already told them thank so they understand.
You all, I am sure, whether one with FTD or as a caregiver and/or family member, have had to deal with similar experiences. I wish I had an answer but I don't. I have explained it so often and in so many different ways that I truly do not think they will ever get it. Perhaps, unless you have dealt with FTD in the first person, it is not possible to understand.
I often become resentful that I need to measure every word and every action beforehand. That is nearly impossible for someone with FTD to do. We have no impulse control, little or no empathy and enough apathy that we often don't care if we insult people. Attempting to control everything you do or say is exhausting if possible at all. I want to scream to the heavens, "I'm sorry, but I just cannot help what my brain does or what it makes my mouth say!"
Some family members and a couple friends seem downright insulted that I prefer talking to my FTD friends, whether online or on the phone, over talking to them. It is comfortable to be talking to someone who cares and who understands. It is relaxing and assuring to be understood and loved despite this disease. It is so much easier to get the correct words out and understood when you don't have to measure every word before it comes out. At least I used to do that. I can't anymore. So, I foresee the day when my FTD friends are the only friends and family left.
So, to all my FTD friends out there, a huge thank you for being there for me anytime I need emotional support. Thank you also to those who put up with me when I am being obnoxious or saying things in a way I think make sense but are in reality not saying what I am thinking.
Above all, thank you God, for giving me a daughter who understands it all, still sees me as just her mom, laughs most of it off and still loves me when she can't.
The first reason is one I have written about so many times. For whatever reason, when someone hears a person has FTD they start avoiding them. I have no idea whether it is that knowing someone they love has dementia makes them afraid to face their own mortality. Perhaps it is because they don't want to be saddled with any responsibility of taking care of someone with dementia. Maybe they think it is true that everyone with dementia is the same and does not realize what is going on, so why bother to visit since they won't remember anyway. I don't think any of us will even solve that conundrum and we will never understand why.
Then comes the difficult reason to admit. I fear that one day I will offend enough people to the point that no one will even love me anymore. Yesterday was an excellent example.
I had offered to pay a couple family member to come to my house and help me go through more of my late husband's "things" and there are a lot of them. They agreed to be here at noon. When they finally arrived at 2:30, my FTD had me quite wound up. Me, I started working on things at the noon hour when I expected them. Now, I must add, they did send a message that they would be late but, of course, my phone was upstairs so I didn't read it until after they had arrived.
Fortunately I love these kids (actually 20 somethings) so much that I kept forcing myself to calm down and kept reminding myself that some people actually have lives that don't include helping me clean out the basement and garage. When they did arrive, without much of a howdy do, I assigned them tasks. I was very glad that I had calmed myself down because they worked quite hard and I have to say that my garage has never looked so clean! Not even when we moved in!
You all probably know already how much any activity can exhaust someone with FTD. If I cook dinner, I am often too exhausted afterward to even eat. I hate it! So you know that working pretty much non-stop going through everything in a file cabinet and an entire closet where my husband stored everything he didn't know where else to put it. It is made even worse because of the emotions involved with going through his things. Around 5:00 or so, a dear friend came by. He is an old family friend so I knew his coming by would not bother the kids and we had not seen each other since weeks before Christmas. This is when the trouble started.
He walked in and a cloud of cologne hit me. He always wears cologne, but this was a different one and it immediately attacked my allergies. Part of the problem was could have been that after breathing dust and probably mold for five hours, my allergies were already kicked into high gear. However, I was exhausted from working so hard for a few hours so reason was not going to be part of my response.
Without even thinking, I asked him, "What did you do, take a bath in cologne?" He snapped back at me, "Not exactly and there's nothing you can do about it now." Ohh, them's fightin' words pardner. I said something to the effect that I could send him upstairs to wash it off or he could go home, take a shower and put on different clothes.
His quick response was "Go ahead and try."
I looked at him for a bit and remembered how long he has been a friend so I choked back the next words my exhaustion and FTD were wanting me to say. There were more unpleasant moments, like when he looked at a couple plastic totes that I had very carefully packed using bubble wrap and lots of packing paper. He said "What the hell is that? It looks like boxes of garbage. I explained it was just the packing paper he was seeing and then he said "It still looks like garbage to me." I took a deep breath and explained that they were two totes packed with expensive dishes that our aunt had passed on to my daughter and that they are in no way garbage. He had to do it though. He said one more time that they still look like garbage.
At that point, I so much wanted to ask him to leave and never come back but I took a couple more deep breaths and let it go. I knew I did not dare open my mouth or this 50-year friendship would be over. Instead, I said that I thought it was past time for us to knock off for the day and invited the kids along to our planned dinner out so I would have a buffer.
It helped a lot. The kids are quite entertaining and I talked mostly with them, including him at times. When he drove me home and came in to visit a bit, I was very careful and kept things light. As exhausted as I was and irritated to boot, I did not trust myself at all.
I can see that, as my FTD progresses, the more I am going to offend people, perhaps not even realizing it when I do. Even though I have explained to people, including him, many times about the symptoms of FTD and how they affect my words and actions, they just do not get it. They think they do and say they do, even to the point of reminding me that I have already told them thank so they understand.
You all, I am sure, whether one with FTD or as a caregiver and/or family member, have had to deal with similar experiences. I wish I had an answer but I don't. I have explained it so often and in so many different ways that I truly do not think they will ever get it. Perhaps, unless you have dealt with FTD in the first person, it is not possible to understand.
I often become resentful that I need to measure every word and every action beforehand. That is nearly impossible for someone with FTD to do. We have no impulse control, little or no empathy and enough apathy that we often don't care if we insult people. Attempting to control everything you do or say is exhausting if possible at all. I want to scream to the heavens, "I'm sorry, but I just cannot help what my brain does or what it makes my mouth say!"
Some family members and a couple friends seem downright insulted that I prefer talking to my FTD friends, whether online or on the phone, over talking to them. It is comfortable to be talking to someone who cares and who understands. It is relaxing and assuring to be understood and loved despite this disease. It is so much easier to get the correct words out and understood when you don't have to measure every word before it comes out. At least I used to do that. I can't anymore. So, I foresee the day when my FTD friends are the only friends and family left.
So, to all my FTD friends out there, a huge thank you for being there for me anytime I need emotional support. Thank you also to those who put up with me when I am being obnoxious or saying things in a way I think make sense but are in reality not saying what I am thinking.
Above all, thank you God, for giving me a daughter who understands it all, still sees me as just her mom, laughs most of it off and still loves me when she can't.
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