Here it is, five days after Christmas. This is not the best day to be writing a blog entry, but I am here anyway.
My daughter left today to return home. I keep telling myself that I was blessed to have her here for an entire week. There is no doubt about that, but now that she is gone, there is this huge silent hole in the house. We will go back to talking on the phone nearly every day, but it just isn't the same.
Usually, my advice to anyone dealing with FTD, those with the disease and those caring for them, is to keep the home as quiet as possible to avoid over stimulation. Right now, thought, I want some of that stimulation back. I want those two crazy grand kitties of mine to be running around, chasing each other, climbing all over us... and the purring. I love the sound of the purring. They do it because they are comfortable and feeling loved and it transfers right back to me.
Another common suggestion I make is to keep things calm, avoid a lot of outside activity and that if you have a lot of things to do, to try to not do them all on the same day. The only thing my daughter and I decided against was taking me to see the new Star Wars movie. She had already seen it and explained how loud and dramatic it was, just like all the other episodes, and how crowded it would be. So, even though she wanted to take me, we opted out of that one. We did go out to eat several times, went to a couple stores for things she can't get where she lives, visited family, had family in to visit, made a nice Christmas Eve dinner and Christmas Brunch for ourselves and family.
We did all this, yet I remained calm through the entire week. If you are wondering why I could do all these things that would normally overwhelm me and spin me into a dangerous whirlpool pulling me down, so was I. I realized that it is really simple. My daughter GETS IT! She can see the signs when I am getting stressed. She knows that when I start turning in circles that it means I can't find the thing that I need to focus on. She recognizes that when we are out, if I start fidgeting, I need to go home or find a quiet spot to regroup. We spent nearly an entire day out and about. We went to the chiropractor, met a friend for lunch, visited my sister and her fiance at their home and met their new kitty, went to a coffee shop for a treat and then went and had manicures. Well, she also had a pedicure, but I can not let anyone touch my feet. That is a definite trigger point anytime, anywhere.
If I tried to do this many activities in one day any other time, or with anyone else, it would probably be a recipe for disaster.
I am going into more detail about our visit than any of you care to know about, I am sure. The point is not to brag about all that we did or what a wonderful mother-daughter relationship we have. We do, there is no doubt about that. My point of it, though, is to reassure you that it is possible to live with FTD.
It is so important to understand one another. For me, or anyone with FTD, to understand what the demands are on the care partner and understand if they get stressed. It is just as important for the care partner to understand what drives the one with FTD. Many of us have the same triggers and reactions to things, but we are all individuals and FTD does not have a set pattern as to what order the brain is attacked.
We must learn to adapt and learn to read each other's emotions. My daughter watches for my trigger signals. She will take me aside and ask me if I am holding up okay or if I want to go home. She stays flexible in her plans. We weren't planning on going to the coffee shop, but she recognized that I needed to sit in a quiet place and recharge for a bit. It was after this break that we went to have our manicures. When we were in the car, she always tried to play music she knew I liked and asked me if it was okay or if I wanted her to turn it off.
Can you imagine what that simple question did to me? It made me realize that I still had some control over my own life. She did not once during that day, say okay, time to go here, time to there. She did not once criticize me. She did though, a couple times, lightly touch my arm and ask me if I was okay or if we needed to go home. Like I said, she gets it. She also displays a whole lot more patience than I do these days!
I write this blog every week and often give advice to the care partners. I explain that over stimulation is a bad thing and that you should not expect your loved one to keep up with a frenetic schedule or interact with a lot of people. Those can be vague concepts to understand. The important thing is to learn to "get" your loved one. Learn the signs of impending doom. At least it feels like that when I get overwhelmed and blow up. Listen to verbal clues and physical clues.
Every one of us with FTD is different just like no other two people are alike, we are not either. We may share some of the symptoms and have the same trigger points. If your loved one did not like crowds or excessive noise before FTD, it is going to be worse now. It is important to recognize the signs, like my tendency to turn in circles when I am overwhelmed. It is a sign that I don't know where to go next. Makes sense when I explain it. If you didn't know this sign, you might think I was just acting out and being difficult. Nope. I do not do it on purpose and I have no control over it. It just happens and keeps up until I crash, blow up, cry, scream or start screaming. Hopefully not all at once.
As I said, you need to try to "get" what the signs and trigger points are for your particular loved one. You need to try different ways of reacting to them to find what works best to keep things from getting out of hand. When your loved one stops cooperating, it may not just them being obstinate. It may be a sign that they have had to much and need to shut down for a while.
If I had been out "on the town" with anyone but my daughter, several of the days we spent together could have been disasters. She took over organizing Christmas morning, without making me aware (until afterward) that she was. She never once let me feel inadequate. She made it clear that she was there if I needed her, there to help, not take over.
All this said, those of us with FTD need to try to do some of the same things. We need to try to learn the signs that our care partner is ready to go over the deep end and try to back off. Just like when we are being overwhelmed and need to go to a quiet place and regroup, it is good if we can recognize when they are being overwhelmed and realize that it is time for us to go to a quiet place so they can regroup.
I must remember to remind my husband that I will be not up to par this week, that I will be out of sorts. I will need to adjust to my daughter being gone and knowing that, most likely, I will not see her until April when we go to the AFTD conference together. When I am getting upset and stressed, I am not going to be able to think "Oh, you are just upset because your daughter left." Instead, I will just be very difficult to get along with and liable to turn the emptiness into anger and lash out at him. More than usual, that is.
New Year's Day is in two days. I am thinking that a good New Year's resolution might be to listen and pay attention to each other... the words, the attitude and the actions. Neither the one with FTD nor the caregiver are quite the same as we were before FTD forced its way into our lives. I'm hoping that this just might make our lives a bit better.
Happy New Year to all of you and may 2018 be one of peace, kindness and love.
Saturday, December 30, 2017
Sunday, December 24, 2017
Where Can We Find the Joy?
This being Christmas Eve, I have a sense of peace, optimism and love. How can I feel this wonderful while dealing with FTD? That answer is simple. My daughter is home for a week-long visit, from her home three states away. My house actually feels like a home again instead of just a place to live. I'm sure all of you understand that. Nothing can take away that feeling and comfort of home like FTD can.
Last week, I had two days that I scheduled to have nothing to do so that I could rest up to enjoy Christmas Day. If there was anything I had forgotten to do, I was determined to forget about it and leave it undone. Unfortunately, it also gave me time to think. It came to me that I felt, not like I had accomplished something, but that I had simply been going through the motions of what was expected. I had decorated the house, baked the cookies, bought the gifts and wrapped them. Well, I don't wrap anymore, I would end up with wrapping paper around myself instead of the package. So, I had stuffed them all into gift bags.
Looking around, I realized I had not enjoyed a bit of it. It had all been too much to do with the limited energy that FTD allows me. This really hit home when I delivered all the cookie trays to those who look forward to them every year. Read "look forward to" as "expect to receive." It is probably not fair for me to expect the recipients to realize what a task it was to accomplish the baking this year. When that one person said to me "The only one I haven't liked so far is your nut rolls. I don't know what you did wrong, but they just aren't good." Of course I didn't think to say something like, "I'm sorry you did not like them, but I did the best I could." Instead, I apologized and said I had no idea what I did wrong. The result was me wondering why I wore myself out for three weeks in order to make the cookies.
There was no joy in any of the preparation work leading up to the holiday. It was just that, work. It all turned out nicely. Well, except for those nut rolls, I guess. The house looked festive. My husband even told me so and in 45 years of marriage, I think that was a first. I believe I bought gifts everyone will like and the planned menus were looking good.
In spite of all the efforts, I wasn't feeling the joy in it. I realized I did it all because I felt obligated to and many people were expecting it. I sat there, feeling exhausted and wondering why I pushed myself so hard to try to make everything perfect for everyone. Staring at the lighted tree, I didn't feel the excitement that I have always felt for the holiday. All I felt was relief that it was done and that pretty soon it would be over so that I could rest and get back to my normal level of craziness.
I was cussing at FTD because it has stolen so much from me and from everyone I love. I was feeling afraid because right now, one of the worst symptoms I am dealing with is paranoia. I was afraid that if someone would dare to criticize anything, that I would 'lose it'. With not a bit of energy left after all the preparations, I fear I will not be able to not take it personally and won't be strong enough to take it for what it is worth, which would be nothing. FTD steals way too much from us, our abilities to do things, to be employed, to have any independence and to just be how we used to be. One of my often repeated mantras is "fake it till you make it" but that wasn't going to happen here.
All in all, I was feeling numb, no emotions and no energy. There was no joy in the meaning of Christmas and no joy in the coming family celebration. BUT, a miracle happened. My daughter arrived. She brought all the joy back to me. I am anxious for her to open her gifts to see her eyes light up, just like they did when she was a child. I see her enjoying her favorite cookies and I feel happy that I could make them for her. I am watching her two cats entertain us, enjoying the snuggles they are giving me and feeling happy that she brought them with her.
Why am I going into all this? Simply to remind everyone to look for the important things. Who cares if the nut rolls don't taste good. Who cares if the gifts aren't beautifully wrapped. Who cares if the meals don't turn out perfectly. That isn't what the holiday is about. Hopefully, next year, I will remember that all those preparations don't matter. The wonderful feelings I have today are what Christmas is all about. The joy I will feel at the church service tonight is even more what it is all about. The hugs and love of family that I am receiving now and will be feeling more of tomorrow when there is more family here... that is what it is about. There is no 'just going through the motions' with that.
My husband and I celebrated our 45th anniversary yesterday. Obviously, he is here and will be here with me tomorrow on Christmas Day. My daughter is here for an entire week. Tomorrow, my sister and her wonderful new love will be here. We will be a family. I may yell, cuss or cry if things don't go right, but it will be okay. We are family and they will understand.
I hope everyone reading this will have a great holiday as well. The rooms may not be as crowded as they used to be as many of our family and friends have deserted us since our diagnoses. That may be a good thing, we don't like crowds anyway. Celebrate those who are there and overlook all the crap FTD brings with it to the party. Hug more, laugh more and enjoy every moment you can. Remember to find a quiet place if things get to be too much. Find that place to sit where no one can come up behind you to startle you. If something is bothering you, like too much music or pets running around, speak up and mention it because there may be a simple solution. If you don't speak up, odds are that no one will understand why all of a sudden you are uncomfortable and grumpy.
To the caregivers and loved ones, please remember how exhausting even fun events can be to someone with FTD. If you see their energy waning, see if there is a way to help. Perhaps a nap or some quite time will help or perhaps it is time for them to leave the festivities. They aren't being a party-pooper on purpose, I promise you!
I must add one more thought. The Christmas season can be difficult for those who do not celebrate the holiday. All the festivities going on around them and they just might feel ignored and left out. If the person you love who has FTD is in this group, please remember that the coming days may be more difficult than usual. If you understand what may be making them feel sad or out of synch, it should be a bit easier to accept and help them through.
I can't help but end with "Merry Christmas to all, and to all, a good night!"
Last week, I had two days that I scheduled to have nothing to do so that I could rest up to enjoy Christmas Day. If there was anything I had forgotten to do, I was determined to forget about it and leave it undone. Unfortunately, it also gave me time to think. It came to me that I felt, not like I had accomplished something, but that I had simply been going through the motions of what was expected. I had decorated the house, baked the cookies, bought the gifts and wrapped them. Well, I don't wrap anymore, I would end up with wrapping paper around myself instead of the package. So, I had stuffed them all into gift bags.
Looking around, I realized I had not enjoyed a bit of it. It had all been too much to do with the limited energy that FTD allows me. This really hit home when I delivered all the cookie trays to those who look forward to them every year. Read "look forward to" as "expect to receive." It is probably not fair for me to expect the recipients to realize what a task it was to accomplish the baking this year. When that one person said to me "The only one I haven't liked so far is your nut rolls. I don't know what you did wrong, but they just aren't good." Of course I didn't think to say something like, "I'm sorry you did not like them, but I did the best I could." Instead, I apologized and said I had no idea what I did wrong. The result was me wondering why I wore myself out for three weeks in order to make the cookies.
There was no joy in any of the preparation work leading up to the holiday. It was just that, work. It all turned out nicely. Well, except for those nut rolls, I guess. The house looked festive. My husband even told me so and in 45 years of marriage, I think that was a first. I believe I bought gifts everyone will like and the planned menus were looking good.
In spite of all the efforts, I wasn't feeling the joy in it. I realized I did it all because I felt obligated to and many people were expecting it. I sat there, feeling exhausted and wondering why I pushed myself so hard to try to make everything perfect for everyone. Staring at the lighted tree, I didn't feel the excitement that I have always felt for the holiday. All I felt was relief that it was done and that pretty soon it would be over so that I could rest and get back to my normal level of craziness.
I was cussing at FTD because it has stolen so much from me and from everyone I love. I was feeling afraid because right now, one of the worst symptoms I am dealing with is paranoia. I was afraid that if someone would dare to criticize anything, that I would 'lose it'. With not a bit of energy left after all the preparations, I fear I will not be able to not take it personally and won't be strong enough to take it for what it is worth, which would be nothing. FTD steals way too much from us, our abilities to do things, to be employed, to have any independence and to just be how we used to be. One of my often repeated mantras is "fake it till you make it" but that wasn't going to happen here.
All in all, I was feeling numb, no emotions and no energy. There was no joy in the meaning of Christmas and no joy in the coming family celebration. BUT, a miracle happened. My daughter arrived. She brought all the joy back to me. I am anxious for her to open her gifts to see her eyes light up, just like they did when she was a child. I see her enjoying her favorite cookies and I feel happy that I could make them for her. I am watching her two cats entertain us, enjoying the snuggles they are giving me and feeling happy that she brought them with her.
Why am I going into all this? Simply to remind everyone to look for the important things. Who cares if the nut rolls don't taste good. Who cares if the gifts aren't beautifully wrapped. Who cares if the meals don't turn out perfectly. That isn't what the holiday is about. Hopefully, next year, I will remember that all those preparations don't matter. The wonderful feelings I have today are what Christmas is all about. The joy I will feel at the church service tonight is even more what it is all about. The hugs and love of family that I am receiving now and will be feeling more of tomorrow when there is more family here... that is what it is about. There is no 'just going through the motions' with that.
My husband and I celebrated our 45th anniversary yesterday. Obviously, he is here and will be here with me tomorrow on Christmas Day. My daughter is here for an entire week. Tomorrow, my sister and her wonderful new love will be here. We will be a family. I may yell, cuss or cry if things don't go right, but it will be okay. We are family and they will understand.
I hope everyone reading this will have a great holiday as well. The rooms may not be as crowded as they used to be as many of our family and friends have deserted us since our diagnoses. That may be a good thing, we don't like crowds anyway. Celebrate those who are there and overlook all the crap FTD brings with it to the party. Hug more, laugh more and enjoy every moment you can. Remember to find a quiet place if things get to be too much. Find that place to sit where no one can come up behind you to startle you. If something is bothering you, like too much music or pets running around, speak up and mention it because there may be a simple solution. If you don't speak up, odds are that no one will understand why all of a sudden you are uncomfortable and grumpy.
To the caregivers and loved ones, please remember how exhausting even fun events can be to someone with FTD. If you see their energy waning, see if there is a way to help. Perhaps a nap or some quite time will help or perhaps it is time for them to leave the festivities. They aren't being a party-pooper on purpose, I promise you!
I must add one more thought. The Christmas season can be difficult for those who do not celebrate the holiday. All the festivities going on around them and they just might feel ignored and left out. If the person you love who has FTD is in this group, please remember that the coming days may be more difficult than usual. If you understand what may be making them feel sad or out of synch, it should be a bit easier to accept and help them through.
I can't help but end with "Merry Christmas to all, and to all, a good night!"
Sunday, December 17, 2017
We Try To Be Strong
A couple things came up this weekend and I realized they go hand in hand.
Yesterday, I called to check up on my aunt and uncle. As we talked, my uncle said to me, "You do know there is a special place in heaven for you, don't you?" I laughed it off and said that I would have more friends with me if I went to hell. His saying this was triggered by me assuring them that their box of Christmas cookies would be arriving this coming week, that I had not forgotten about them. Even though I am unable to deliver them in person this year, I was making sure they got them. They are part of the reason I have been baking for the past three weeks or so.
He went on to explain why he felt that way, that he views me as a very strong person in how I persevere through life with FTD. He believes that, despite knowing there is no treatment or cure, I keep up with everything I can and still take time to think of others. I do, and it might just be selfishness that inspires that. It makes me feel good to help others since there isn't a whole lot I can do to help myself.
I reminded him about the online support group that I rely on so heavily. I talked about how I see almost everyone in the groups doing the same thing, helping each other and helping others whether they be family, friends or strangers.
This part of our conversation did not last long even though it is taking me a bit to explain it. When we hung up, it did not stay in the front of my mind. Then today, while going through the postings on one of the online support groups, I saw that a friend was giving us an update on her situation. In reading about everything she is dealing with (and it is a lot), it made me realize just how strong she is and how strong all of us in the group are. Then I remembered yesterday's conversation with my uncle.
These two conversations really got me thinking about our lives with FTD. With this disease, it would be really tempting to just give up and sit around, waiting for it to end our lives. We don't do that though. We fight! We fight to get diagnosed. We fight by doing our own research. I would put the knowledge we each have up against 95% of doctors out there and be confident that we would know more about FTD than they would. We fight for answers on just how this disease is affecting us. We do that by asking questions of each other. We fight to support each other and to lean on each other. We are forced to fight for financial assistance we are entitled to, yet are denied time after time. We fight to live!
If it was not for us "comparing notes" on these support groups, we probably would not have any clue as to what symptoms we are experiencing are related to FTD and which are not. I cannot tell you how often I will be reading through the posts on one of the support groups and have an "aha" moment. These things I had not realized could be FTD related can be little things I have been noticing about myself or even some big things. The "aha" part comes when I realize that it is probably FTD related and I had not even given that a thought. That was how I learned that the Alzheimer's medication can actually make FTD worse. The doctors, not knowing that all dementias are not alike, don't know that so they think they are helping us by prescribing them. I felt much better after I weaned off them. It can be simpler things like how my taste in foods has changed and I no longer like the same things I used to.
We compare notes about suffering from night terrors and how to deal with family members. We make suggestions to each other as to how to cope with an upcoming event. We pat each other on the back when we recognize what they have attempted to do. We are stronger as a group than we are as each of us alone.
I have mentioned before that I see a psychologist who specializes in dementias. She is a great source of support and I get great benefit from seeing her, even though, at this point, it is only once a month. I could not go that long, and would be paying a lot more copays, if I did not have the daily support of those in our support groups.
Yes, we are strong. We have to be. We have learned how to cope with FTD well enough to be strong. We lean on each other some days and other days we help support someone else. I am not strong on my own. I am strong by leaning on my online friends and my family.
On days when I am not feeling strong, am feeling sorry for myself or feeling very angry that I am being forced to deal with FTD, I retreat. I hide in my room, I don't talk on the phone, I don't talk on the support groups. I am not always as strong as I appear to be. From talking with others with FTD, I think we all have days and weeks of this anger and regret. However, we also recognize that it is self defeating and makes us weaker, so we dig deeper and find more strength and keep going, keep smiling and pretending we are just fine.
It is this digging deeper, putting on a smile and pushing on that makes those people, who know very little about FTD, say "You seem just fine to me." And that is why we rely on each other. This disease is not one that those who have not lived with it, either having the disease themselves or being a care partner for one who does, can not comprehend just how debilitating and defeating it can be. How impossible it can be for us to cope some days.
To my online support group friends, I thank you and thank God for you. Without you, I would not be strong at all.
Yesterday, I called to check up on my aunt and uncle. As we talked, my uncle said to me, "You do know there is a special place in heaven for you, don't you?" I laughed it off and said that I would have more friends with me if I went to hell. His saying this was triggered by me assuring them that their box of Christmas cookies would be arriving this coming week, that I had not forgotten about them. Even though I am unable to deliver them in person this year, I was making sure they got them. They are part of the reason I have been baking for the past three weeks or so.
He went on to explain why he felt that way, that he views me as a very strong person in how I persevere through life with FTD. He believes that, despite knowing there is no treatment or cure, I keep up with everything I can and still take time to think of others. I do, and it might just be selfishness that inspires that. It makes me feel good to help others since there isn't a whole lot I can do to help myself.
I reminded him about the online support group that I rely on so heavily. I talked about how I see almost everyone in the groups doing the same thing, helping each other and helping others whether they be family, friends or strangers.
This part of our conversation did not last long even though it is taking me a bit to explain it. When we hung up, it did not stay in the front of my mind. Then today, while going through the postings on one of the online support groups, I saw that a friend was giving us an update on her situation. In reading about everything she is dealing with (and it is a lot), it made me realize just how strong she is and how strong all of us in the group are. Then I remembered yesterday's conversation with my uncle.
These two conversations really got me thinking about our lives with FTD. With this disease, it would be really tempting to just give up and sit around, waiting for it to end our lives. We don't do that though. We fight! We fight to get diagnosed. We fight by doing our own research. I would put the knowledge we each have up against 95% of doctors out there and be confident that we would know more about FTD than they would. We fight for answers on just how this disease is affecting us. We do that by asking questions of each other. We fight to support each other and to lean on each other. We are forced to fight for financial assistance we are entitled to, yet are denied time after time. We fight to live!
If it was not for us "comparing notes" on these support groups, we probably would not have any clue as to what symptoms we are experiencing are related to FTD and which are not. I cannot tell you how often I will be reading through the posts on one of the support groups and have an "aha" moment. These things I had not realized could be FTD related can be little things I have been noticing about myself or even some big things. The "aha" part comes when I realize that it is probably FTD related and I had not even given that a thought. That was how I learned that the Alzheimer's medication can actually make FTD worse. The doctors, not knowing that all dementias are not alike, don't know that so they think they are helping us by prescribing them. I felt much better after I weaned off them. It can be simpler things like how my taste in foods has changed and I no longer like the same things I used to.
We compare notes about suffering from night terrors and how to deal with family members. We make suggestions to each other as to how to cope with an upcoming event. We pat each other on the back when we recognize what they have attempted to do. We are stronger as a group than we are as each of us alone.
I have mentioned before that I see a psychologist who specializes in dementias. She is a great source of support and I get great benefit from seeing her, even though, at this point, it is only once a month. I could not go that long, and would be paying a lot more copays, if I did not have the daily support of those in our support groups.
Yes, we are strong. We have to be. We have learned how to cope with FTD well enough to be strong. We lean on each other some days and other days we help support someone else. I am not strong on my own. I am strong by leaning on my online friends and my family.
On days when I am not feeling strong, am feeling sorry for myself or feeling very angry that I am being forced to deal with FTD, I retreat. I hide in my room, I don't talk on the phone, I don't talk on the support groups. I am not always as strong as I appear to be. From talking with others with FTD, I think we all have days and weeks of this anger and regret. However, we also recognize that it is self defeating and makes us weaker, so we dig deeper and find more strength and keep going, keep smiling and pretending we are just fine.
It is this digging deeper, putting on a smile and pushing on that makes those people, who know very little about FTD, say "You seem just fine to me." And that is why we rely on each other. This disease is not one that those who have not lived with it, either having the disease themselves or being a care partner for one who does, can not comprehend just how debilitating and defeating it can be. How impossible it can be for us to cope some days.
To my online support group friends, I thank you and thank God for you. Without you, I would not be strong at all.
Sunday, December 10, 2017
For Christmas, "K.I.S.S" (not Hershey's)
With apologies to nursery rhymes everywhere:
"Christmas is coming, I want to make it grand,
Please put a glass of wine right here in my hand."
There is no doubt about it. Christmas is my favorite day of the year. No, it's not about the gifts, at least not the gifts for me. I cherish every gift I get, but I have always enjoyed giving gifts more than receiving them. As I said, it's not about the gifts, it is all about the traditions in our family that make it Christmas for me.
Our daughter lives three states away, so having her home for an entire week is a joy unto itself. She even brings my grand"kitties" to liven up the household. She will help with the traditions that don't need to be done ahead of time. She will also reprimand me for not waiting to do some of the things until she got here. My husband helps with what he can, but is also dealing with dementia (not FTD).
With two weeks yet to go, I am already feeling stressed, even though I have made a lot of changes in the way I handle all the preparations. The way I do everything may not work for you, but I will tell you about those that work for me.
SHOP EARLY: This is not something new for me since FTD. After a nasty Christmas shopping adventure in the "City of No Brotherly Love" 20 years ago, I have always tried to have my shopping done by Thanksgiving. Doing that now, with FTD, helps to allow me to focus on other Christmas things.
SHOP EASY: I no longer worry about having the absolutely perfect gift for everyone. I find something I am sure they will love, even if it is not #1 on their list. Nothing has to be perfect. It is something I tell myself constantly since FTD and it actually sinks in once in a while. I also have broken down and asked for lists. I will buy off the list and then try to have at least a small gift not on the list so it can be a surprise. The stress of trying to come up with the perfect gift is way too much for me since FTD. Also, one or two gifts per person is perfectly adequate.
SHOP ONLINE: I purchased everything online this year. Most business offer either free shipping or greatly reduced shipping fees during the holidays. I also stick to businesses I know will gladly accept exchanges. When I wrap a gift, I include, underneath the item, the original package and the packing slip so the person can take care of the exchange themselves.
WRAP SIMPLY: I cringed when gift bags started becoming popular and swore I would never use them. I always carefully wrapped and decorated everyone's packages. It would take at least an entire day with Christmas music playing in the background. I enjoyed it. It was one of those traditions. Since FTD, I broke down and gradually started using them. This year, everything is in bags. I had everything "wrapped" in about an hour. They don't look as lovely under the tree, but some traditions have to be modified in order for me to stay sane.
PACE YOURSELF: I know I have written before about all the cookies I bake for Christmas. The list of people who want a tray of my cookies is quite long. I finally forced myself to pare down the list. All the people who I never hear from throughout the year or those who never reciprocate with anything for us are off my list. I still bake 12-14 kinds depending on how long I can hold up, but I bake less of them. I am actually down to a single recipe's worth for many of them. (Gasp!) Allowing myself time to rest is essential. For instance, I only bake one kind a day, maybe two if they are easier ones. If I push myself harder than that, I will soon be out of commission for days. This is true for more than just baking. The day I wrapped everything? Even though I was done in an hour, that was enough for that day. I felt wiped out.
DECORATING: I have come up with a simple way to decorate the outside of our house. It only involves four of the net lights, one string of lights and dragging two elves up from the basement to display on the front porch. No ladders involved. The most work is hanging the string of lights around the front door. Combined with the tree that can be seen through the front window, our house looks reserved, but just as festively decorated as all the others. As for indoor decorating, I admit I have gone overboard for 40 years. I have 10 large totes full of indoor decor. The past two years and this year, only half of them have even been opened. Again, the house looks perfectly festive without all the others. I can't bring myself to toss anything though!
FOOD: Suggestions for this is to keep it simple. It took me three years into FTD to get that message. I select things that don't require a lot of attention. I used to have a big meal both Christmas Eve and Christmas day. I now do not entertain on Christmas Eve at all. It is just my daughter, my husband and I. The meal is light and easy. We would probably do pizza if any place was open. Instead, our new Christmas Eve tradition is hot buttered rum. It is decadent, loaded with calories, but it is festive as we sit in front of the fireplace. The biggest suggestion I have for food, besides keeping it simple, is accept help! Allowing someone to bring side dishes helps enormously. Allowing (just one or two) people, who want to help, into my kitchen is now welcomed. This was really tough for me the first couple years but it got much easier to accept. It also means that I am not too tired to sit down and eat the meal!
REST: If Christmas is at your house, like ours is, take breaks. Retreat to your quiet space often, even if just for a few minutes at a time. In addition to no longer entertaining on Christmas Eve, I only offer brunch on Christmas day. I have limited how many people who come on that day as well. This year is will be just five of us. After I have explained to others that I can no longer handle more due to my FTD, if they don't understand, that is on them not me.
VISITING: I go to other people's homes, or to parties, as rarely as possible. Being in a less familiar environment has become too stressful to enjoy them at all. The other people I would like to visit with over the holidays are invited here, but on a different day.
NO APOLOGIES: I no longer fuss and apologize to anyone because of the limitations FTD has thrust upon me. I do believe that if they don't understand, they probably shouldn't be in my life right now anyway. The same thing applies to Christmas cards. I have pared our list down below 40. Yes, that is less, it used to be around 100. That's what happens when you have lived in a lot of places. I do not send to those who have not sent one in the past two years, except for family members who I know don't send cards. I also use printed labels. My card list is now on the computer in label format. I used to hate getting cards that way, it seemed too impersonal. Now I realize that they were the smart ones.
Bottom line is what I already said: Keep it simple, stupid! No, I'm not calling you stupid, it was me who took a few years too many to get over having to have everything perfect and to insist on keeping up with all the traditions. Guess what? I think I am the only one who misses any of them! I think, just maybe, they enjoy having me be out of the kitchen for at least part of the day.
Yes, I am serious about that glass of wine in my hand. I find a small glass of wine in the evening allows me to decompress and get somewhere close to relaxing.
"Christmas is coming, I want to make it grand,
Please put a glass of wine right here in my hand."
There is no doubt about it. Christmas is my favorite day of the year. No, it's not about the gifts, at least not the gifts for me. I cherish every gift I get, but I have always enjoyed giving gifts more than receiving them. As I said, it's not about the gifts, it is all about the traditions in our family that make it Christmas for me.
Our daughter lives three states away, so having her home for an entire week is a joy unto itself. She even brings my grand"kitties" to liven up the household. She will help with the traditions that don't need to be done ahead of time. She will also reprimand me for not waiting to do some of the things until she got here. My husband helps with what he can, but is also dealing with dementia (not FTD).
With two weeks yet to go, I am already feeling stressed, even though I have made a lot of changes in the way I handle all the preparations. The way I do everything may not work for you, but I will tell you about those that work for me.
SHOP EARLY: This is not something new for me since FTD. After a nasty Christmas shopping adventure in the "City of No Brotherly Love" 20 years ago, I have always tried to have my shopping done by Thanksgiving. Doing that now, with FTD, helps to allow me to focus on other Christmas things.
SHOP EASY: I no longer worry about having the absolutely perfect gift for everyone. I find something I am sure they will love, even if it is not #1 on their list. Nothing has to be perfect. It is something I tell myself constantly since FTD and it actually sinks in once in a while. I also have broken down and asked for lists. I will buy off the list and then try to have at least a small gift not on the list so it can be a surprise. The stress of trying to come up with the perfect gift is way too much for me since FTD. Also, one or two gifts per person is perfectly adequate.
SHOP ONLINE: I purchased everything online this year. Most business offer either free shipping or greatly reduced shipping fees during the holidays. I also stick to businesses I know will gladly accept exchanges. When I wrap a gift, I include, underneath the item, the original package and the packing slip so the person can take care of the exchange themselves.
WRAP SIMPLY: I cringed when gift bags started becoming popular and swore I would never use them. I always carefully wrapped and decorated everyone's packages. It would take at least an entire day with Christmas music playing in the background. I enjoyed it. It was one of those traditions. Since FTD, I broke down and gradually started using them. This year, everything is in bags. I had everything "wrapped" in about an hour. They don't look as lovely under the tree, but some traditions have to be modified in order for me to stay sane.
PACE YOURSELF: I know I have written before about all the cookies I bake for Christmas. The list of people who want a tray of my cookies is quite long. I finally forced myself to pare down the list. All the people who I never hear from throughout the year or those who never reciprocate with anything for us are off my list. I still bake 12-14 kinds depending on how long I can hold up, but I bake less of them. I am actually down to a single recipe's worth for many of them. (Gasp!) Allowing myself time to rest is essential. For instance, I only bake one kind a day, maybe two if they are easier ones. If I push myself harder than that, I will soon be out of commission for days. This is true for more than just baking. The day I wrapped everything? Even though I was done in an hour, that was enough for that day. I felt wiped out.
DECORATING: I have come up with a simple way to decorate the outside of our house. It only involves four of the net lights, one string of lights and dragging two elves up from the basement to display on the front porch. No ladders involved. The most work is hanging the string of lights around the front door. Combined with the tree that can be seen through the front window, our house looks reserved, but just as festively decorated as all the others. As for indoor decorating, I admit I have gone overboard for 40 years. I have 10 large totes full of indoor decor. The past two years and this year, only half of them have even been opened. Again, the house looks perfectly festive without all the others. I can't bring myself to toss anything though!
FOOD: Suggestions for this is to keep it simple. It took me three years into FTD to get that message. I select things that don't require a lot of attention. I used to have a big meal both Christmas Eve and Christmas day. I now do not entertain on Christmas Eve at all. It is just my daughter, my husband and I. The meal is light and easy. We would probably do pizza if any place was open. Instead, our new Christmas Eve tradition is hot buttered rum. It is decadent, loaded with calories, but it is festive as we sit in front of the fireplace. The biggest suggestion I have for food, besides keeping it simple, is accept help! Allowing someone to bring side dishes helps enormously. Allowing (just one or two) people, who want to help, into my kitchen is now welcomed. This was really tough for me the first couple years but it got much easier to accept. It also means that I am not too tired to sit down and eat the meal!
REST: If Christmas is at your house, like ours is, take breaks. Retreat to your quiet space often, even if just for a few minutes at a time. In addition to no longer entertaining on Christmas Eve, I only offer brunch on Christmas day. I have limited how many people who come on that day as well. This year is will be just five of us. After I have explained to others that I can no longer handle more due to my FTD, if they don't understand, that is on them not me.
VISITING: I go to other people's homes, or to parties, as rarely as possible. Being in a less familiar environment has become too stressful to enjoy them at all. The other people I would like to visit with over the holidays are invited here, but on a different day.
NO APOLOGIES: I no longer fuss and apologize to anyone because of the limitations FTD has thrust upon me. I do believe that if they don't understand, they probably shouldn't be in my life right now anyway. The same thing applies to Christmas cards. I have pared our list down below 40. Yes, that is less, it used to be around 100. That's what happens when you have lived in a lot of places. I do not send to those who have not sent one in the past two years, except for family members who I know don't send cards. I also use printed labels. My card list is now on the computer in label format. I used to hate getting cards that way, it seemed too impersonal. Now I realize that they were the smart ones.
Bottom line is what I already said: Keep it simple, stupid! No, I'm not calling you stupid, it was me who took a few years too many to get over having to have everything perfect and to insist on keeping up with all the traditions. Guess what? I think I am the only one who misses any of them! I think, just maybe, they enjoy having me be out of the kitchen for at least part of the day.
Yes, I am serious about that glass of wine in my hand. I find a small glass of wine in the evening allows me to decompress and get somewhere close to relaxing.
Saturday, December 2, 2017
Does FTD Really Bring Paranoia?
Paranoia is one of those unwanted gifts that FTD brings along with it. Add in the fact that I spent many years being quick to become paranoid and I was always thinking that I am not good enough, doing enough, that nobody likes me or that I am not smart enough.
Before FTD, I was usually able to talk myself out of these thoughts very quickly. If all else failed, I would create something. Using my creative and artistic talents always snapped me out of it by making me feel good about myself and my creation. Plus, I made great strides in realizing it was distorted thinking that was causing these thoughts. I read a book once that used the analogy of someone who lived their entire life in a contained environment and the only mirror was distorted, like a fun house mirror. After living like that for a number of years, no one would be able to convince that person that the mirror was wrong. Instead, s/he would think all the perfect mirrors were distorted and never believe that the new image was correct. It is amazing how much that affected me and helped me recognize my worth. This eye-opening experience was longer than 30 years ago and it changed my life allowing me to be happy, appreciate and enjoy my life. I realized the first 18 years of my life did not need to control the rest of it. That's probably a whole lot more about my formative years than you ever cared to know, but I thought it necessary to explain my past experience with paranoid thoughts.
Then came FTD. Not being able to do things I could before the disease or not being able to do them as well can be totally defeating. Just the other day, someone relayed a conversation that two people had shared. They were wanting to do a get together before the holidays. They both started raving about my cooking and entertaining abilities and thought that, if they asked, I would host the get together. It nearly broke my heart to have to refuse. I used to love doing these things but just cannot anymore for all the reasons I have written about in so many blogs before this.
The friend seemed shocked that I would refuse. Of course, I started trying to explain about my limitations, but the conversation was cut short. They did not, or could not, fathom how hosting something like that is now beyond my capabilities but that, also, would cause me to not enjoy the event and would put me into a tailspin for a few days.
Now the paranoia of FTD comes into play. Since then, I have heard nothing about a holiday get together. Were they offended because I couldn't do it? Did they not believe that I was truthful when I said I couldn't? Were they really not my friends and had been including me so that I would do the work? Or, was no one else willing play hostess and the plans fell apart? If I were to discuss this with anyone, they would brush my concern aside and insist I was reading too much into it. Truth is, this could be the case but FTD won't seem to let my heart believe it.
There are many things that I don't even attempt to do anymore because I know I cannot do them as well as I could before FTD. Not only do I believe that others will judge what I have done and find it lacking, but I do that to myself as well. Is this paranoia or is this just recognizing my limitations.
A common thread of a lot of conversations I have with others who are dealing with FTD is how friends and family don't come around anymore. All those who, when I first diagnosed, had said that we can count on them and they will help us get through it. Those people, I do believe, meant well. I have to believe that they don't follow through because they are uncomfortable being with this new person. FTD has definitely changed some of who I am, how I speak, how I look, and what I can or cannot do anymore. There are many times I realize that I wouldn't want to spend much time with myself either. So I forgive them. It still hurts, but I forgive them.
Some days, the paranoia will seem to kick in to the point that I wonder if I really do not say the things the things that I think I do. Someone will come up to me and start asking me about something that either needs done or that I should know about. I will try to explain that we had just talked about this the day before and go through the explanation again. This might happen several times. By then, I blow up at them and tell them that I have already explained this several times. I clearly remember the conversation, but they do not. They absolutely refuse to believe we had already talked about it. All the thoughts start running through my head: am I imagining conversations, am I hallucinating, am I going insane in addition to the FTD? Is it a combination of these things?
I don't think any of these thoughts are correct. I think that a lot of people dismiss everything that I have to say because they truly think that, since I have FTD, I don't have anything of value to say. I also believe that I do ramble on about things, usually things that are of no interest to anyone other than myself. I imagine the people who spend a lot of time with me start to block out anything that I am saying. Nothing like talking to someone for two minutes and then have them look up and say "Huh? Did you say something?"
This all brings me to question whether FTD really does bring paranoia. Is it paranoia that makes me believe that people don't want to bother spending time with me or is the harsh truth that many people don't want anything to do with someone who can no longer do the things they used to do for them? Are they reluctant to spend time with me because they fear the same thing could happen to them? Am I talking and making no sense when I do without realizing it or does the person just not want to listen? Do they realize my mind is not quite as sharp as it used to be so they deem everything I say as gibberish? Do they ask me about the same things several times because, either consciously or subconsciously, they dismiss what I say before I even say it?
This produces a true conundrum. People. on the other side of all these scenarios, probably totally believe that I am being paranoid and that they are positive they are correct. As for me, are they truly dismissing what I have to say even when I am answering their question or am I paranoid for thinking that way?
I always had a deep interest in Psychology and often wish I had pursued it and actually studied it. If I had, maybe I could figure out the answer to this. In the meantime, I keep coming back to the old adage "Just because you think they are out to get you doesn't mean that they are not."
Before FTD, I was usually able to talk myself out of these thoughts very quickly. If all else failed, I would create something. Using my creative and artistic talents always snapped me out of it by making me feel good about myself and my creation. Plus, I made great strides in realizing it was distorted thinking that was causing these thoughts. I read a book once that used the analogy of someone who lived their entire life in a contained environment and the only mirror was distorted, like a fun house mirror. After living like that for a number of years, no one would be able to convince that person that the mirror was wrong. Instead, s/he would think all the perfect mirrors were distorted and never believe that the new image was correct. It is amazing how much that affected me and helped me recognize my worth. This eye-opening experience was longer than 30 years ago and it changed my life allowing me to be happy, appreciate and enjoy my life. I realized the first 18 years of my life did not need to control the rest of it. That's probably a whole lot more about my formative years than you ever cared to know, but I thought it necessary to explain my past experience with paranoid thoughts.
Then came FTD. Not being able to do things I could before the disease or not being able to do them as well can be totally defeating. Just the other day, someone relayed a conversation that two people had shared. They were wanting to do a get together before the holidays. They both started raving about my cooking and entertaining abilities and thought that, if they asked, I would host the get together. It nearly broke my heart to have to refuse. I used to love doing these things but just cannot anymore for all the reasons I have written about in so many blogs before this.
The friend seemed shocked that I would refuse. Of course, I started trying to explain about my limitations, but the conversation was cut short. They did not, or could not, fathom how hosting something like that is now beyond my capabilities but that, also, would cause me to not enjoy the event and would put me into a tailspin for a few days.
Now the paranoia of FTD comes into play. Since then, I have heard nothing about a holiday get together. Were they offended because I couldn't do it? Did they not believe that I was truthful when I said I couldn't? Were they really not my friends and had been including me so that I would do the work? Or, was no one else willing play hostess and the plans fell apart? If I were to discuss this with anyone, they would brush my concern aside and insist I was reading too much into it. Truth is, this could be the case but FTD won't seem to let my heart believe it.
There are many things that I don't even attempt to do anymore because I know I cannot do them as well as I could before FTD. Not only do I believe that others will judge what I have done and find it lacking, but I do that to myself as well. Is this paranoia or is this just recognizing my limitations.
A common thread of a lot of conversations I have with others who are dealing with FTD is how friends and family don't come around anymore. All those who, when I first diagnosed, had said that we can count on them and they will help us get through it. Those people, I do believe, meant well. I have to believe that they don't follow through because they are uncomfortable being with this new person. FTD has definitely changed some of who I am, how I speak, how I look, and what I can or cannot do anymore. There are many times I realize that I wouldn't want to spend much time with myself either. So I forgive them. It still hurts, but I forgive them.
Some days, the paranoia will seem to kick in to the point that I wonder if I really do not say the things the things that I think I do. Someone will come up to me and start asking me about something that either needs done or that I should know about. I will try to explain that we had just talked about this the day before and go through the explanation again. This might happen several times. By then, I blow up at them and tell them that I have already explained this several times. I clearly remember the conversation, but they do not. They absolutely refuse to believe we had already talked about it. All the thoughts start running through my head: am I imagining conversations, am I hallucinating, am I going insane in addition to the FTD? Is it a combination of these things?
I don't think any of these thoughts are correct. I think that a lot of people dismiss everything that I have to say because they truly think that, since I have FTD, I don't have anything of value to say. I also believe that I do ramble on about things, usually things that are of no interest to anyone other than myself. I imagine the people who spend a lot of time with me start to block out anything that I am saying. Nothing like talking to someone for two minutes and then have them look up and say "Huh? Did you say something?"
This all brings me to question whether FTD really does bring paranoia. Is it paranoia that makes me believe that people don't want to bother spending time with me or is the harsh truth that many people don't want anything to do with someone who can no longer do the things they used to do for them? Are they reluctant to spend time with me because they fear the same thing could happen to them? Am I talking and making no sense when I do without realizing it or does the person just not want to listen? Do they realize my mind is not quite as sharp as it used to be so they deem everything I say as gibberish? Do they ask me about the same things several times because, either consciously or subconsciously, they dismiss what I say before I even say it?
This produces a true conundrum. People. on the other side of all these scenarios, probably totally believe that I am being paranoid and that they are positive they are correct. As for me, are they truly dismissing what I have to say even when I am answering their question or am I paranoid for thinking that way?
I always had a deep interest in Psychology and often wish I had pursued it and actually studied it. If I had, maybe I could figure out the answer to this. In the meantime, I keep coming back to the old adage "Just because you think they are out to get you doesn't mean that they are not."
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