Bear with me for a minute here... Arrrrrgggghhhh! I just spent an hour an a half writing a blog entry. Of course it was brilliant. I found all the right words. Solved all the FTD problems in the world and amazed others with my brilliance. Don't I wish? I did have today's blog completely written and swore I had saved it properly. Perhaps the internet gods knew that no one would have wanted to read it anyway.
The main topic was about the joy I was blessed with today. Earlier this week, I received a private message from an FTD'er who was going to be visiting my newly adopted home of Charlotte NC and hoped we could actually meet... in person.
I do hope she had as much fun as I did. I love getting to meet my FTD online friends in person. In this case, we hit it off from the moment she walked in the door. There is nothing like starting a visit with a huge, heart-felt hug! Our conversation never stopped and we never had to worry that when we struggled for a word that the other would interrupt and try to complete our sentences for us. My daughter, my designated drive as well as all the other roles she fills, understands the how and why of letting us think of the words ourselves as well. When I started having swallowing issues, no one asked why I was not eating. Like so many of us with FTD, my new friend and I had a huge amount of things in common. Of course our signs and symptoms varied because, as we all know, NO 2 CASES OF FTD ARE THE SAME.
Shout that from the rafters everyone, please! I keep thinking I should save a file of stock answers to questions. Why does my xxx not do yyy like many of you other FTD'ers can? Answer: The brain consists of a huge number of brain cells. Your signs and symptoms are determined by which brain cells are killed off and by which ones have been spared so far. It might be nice to have a chart of what abilities we will lose when, but that will never happen.
I often have my diagnosis questioned because they cannot understand how I can still write somewhat intelligently. They don't stop to think that perhaps my writing was better before FTD, and it was. The biggest difference is that back then I did not need to proofread everything at least 12 times. For instance, The last sentence "...still write somewhat..." Before the fourth read through, it still said "...still write someone..." They also have no idea that all my artistic abilities are gone. When I packed up my house to move, I threw away all my trophies and awards for my artwork. They meant nothing to me anymore and only served as a reminder of what I have lost.
I kept the art pieces, but did not want reminders of what I used to be able to do. For me, it is healthier to focus on what I can do now. Past awards mean nothing to me now but it may be the reverse for others. It may be more helpful to keep the reminders of past abilities you had. We rarely react in just the same way, because we are all different when it comes to progression of our disease.
I cannot help but think of my friend, Alan, who now writes beautiful, heartfelt, poetry. He wrote a poem for me when my husband died that is now one of my most prized possessions. My friend, Dale, has found new artistic abilities. When she and her husband came to my aid when my husband died, she gave me the gift of one of her paintings she had done after FTD when her amazing artistic abilities came about. Her husband gifted me a piece of his art of making beautiful things from ordinary stones. All three of these gifts will be treasured forever.
Wow, I really digressed here. I was talking about how much fun we had at brunch and veered totally off subject. Then again, as vast as the subject of FTD can be, maybe it was all the same subject. Yeah, Cindy, keep telling yourself that!
Back to the subject of enjoying my visit so much. I have written many times about the joys of attending the AFTD conferences. I have convinced quite a few others to attend them along the way as well. I do believe they enjoyed themselves just as much as I have.
To me, at conference, my FTD symptoms disappear. The last one I attended in Los Angeles, I had the opportunity to speak on stage. I realized that my Parkinsonism symptom of shaking kicked in while holding the copy of what I was going to say and that caused me to lose my place a few times. When I later saw the tape of it, I realized just how badly I was shaking. It didn't bother me though. I knew my fellow FTD'ers in the audience understood and I figured it was good for all the audience members to see it happening. Then again, they may have thought I was extremely nervous. The thing with that is, that since FTD I can talk to anyone, in front of anyone, including crowds.
All those inhibitions are gone. If I goof up or someone finds fault with what I say, who cares? I sure don't. Those inhibitions probably disappeared right along with my loss of impulse control. Now, that one does get me into trouble once in a while. Okay, maybe more than once in a while. But... going to an expression I hate... it is what it is. I can't stop it. I can try to reel it in and I definitely apologize often but if I think of saying it or think of doing it, I probably will.
As many times as I proofread my blogs and other writings, inappropriate things do slip in there. The ones I care most about, my fellow FTD'ers, understand and accept or at least forgive. And, that, my friends, is the reason I love spending time with FTD'ers.
Dawn, I loved meeting you today and hope we get many more opportunities. Fair warning though, I will keep encouraging you to go to conferences... if we ever get to have one again.
Oops, one more thought. Politics and FTD, at least in my mind, do not mix well.
Saturday, May 30, 2020
Sunday, May 24, 2020
There are no Absolutes!
Things have been interesting since I was able to once again start blogging after a couple months of being too busy and too exhausted. In addition to having the time and energy to blog, I have also been spending more time in the support groups. That has been heartwarming and informative, yet, sometimes, downright scary.
Many bloggers have been posting very strong and absolute opinions. I know I have been guilty of making absolute statements once in while, but I really do try not to. As we all know, no two cases of FTD are the same. There are no absolutes. That is except for the absolute that FTD sucks all the way around.
When I see other bloggers and self-appointed "experts" asserting things like "No one with dementia should be on this medication." or "Your loved one obviously has xxx/diagnosis," I get frightened. We are not experts and there are perils in diagnosing when you don't have an M.D. or D.O. behind your name. I will admit I have caught myself coming downright close to that, but when I do, I back off and recommend that they discuss it with their or their loved one's doctor. Just because we have FTD or care for someone who does, it does not make us an expert. I try to use the word "possibly" or "could".
Medication that help one person with FTD may not help the next person. Answers to behavioral questions are the same. There are so many different ways for an FTD (or any dementia) patient to react to the same stimuli that, just as with medications, one way of handling a situation with one patient may worsen the situation for another.
Posts by caregivers often anger me. I am pretty sure everyone knows it when that happens. I try to bite my tongue, but sometimes I just cannot. No, the FTD patient is probably not plotting to make your life miserable. First of all, the FTD mind is usually not able to put together a plan to do so. More often, they are desperate for love, signs of affection, understanding or comfort. Also, you must include how frightened they can feel and lonely in their battle. "Why is this happening to me?" "Why does no one understand or tell me what and why these things are happening to me."
This is not to say that someone with FTD cannot try to gain these things when they are lacking. My mother, while in an assisted living facility that was near to my sister, would do things like hide her glasses. She could remember that the last time that happened, the staff called my sister and she came right over. To me, this was not being manipulative. It was just a case of her being lonely and actually able to come up with an excuse to get my sister to visit. She was not able to think through that if she was not there, my sister must be busy or not feeling well. That is too many layers of thought processes for her. She was lonely and came up with a way to get my sister to visit. The end! Of course it only worked once. She was not being selfish, not being mean, not being manipulative. She was lonely and bored.
I just have to share one of my favorite memories of my mom while she was in that assisted living facility. My husband and I had driven to Florida from Pennsylvania and were visiting with her as much as we could. After a few visits, my mom looked at my husband, put her hands on her hips and said "Just who are you and what do you want?" No, it wasn't funny that she was confused. It was that this was totally something she would have done and in the same manner in years past. My poor husband suffered the abuse of all of us asking him that until he died. Hey, you have to find humor where you can.
Recently, I read a post that said "No one with dementia should ever take this drug!" That is probably true of many drugs, such as the anesthesia medication Versed, but there are no absolutes. There are times that even Versed must be used despite the probable escalation of FTD symptoms.
The problem in this particular incident is that it was a prescription medication that helps a huge number of dementia patients. Without it, the patient can hurt themselves and others from lack of sleep, too much restlessness, agitation and anger. Yes, it would be ideal if no one with dementia had those symptoms or if those symptoms did not create dangerous situations. Perhaps a particular medication is not the ideal for FTD/dementia, but this is something that needs to be discussed with the patient's doctor. It must be weighed between the side effects of the medication versus the risks presented by not taking it. It must also be remembered how many different types of dementia exist. A medication that is good or harmful with one type of dementia may be the opposite for someone with a different type.
Caregivers can fall into the same trap with absolute advice such as "You MUST not allow this" or "You must stop allowing them to eat this" or "You must take this step to prevent injury." Just because something has worked in their situation, does not mean it will work for all.
A good example is one of my pet peeves... when caregivers talk about locking up food from the FTD'er. I have written about it many times. To me, that seems cruel and obvious that the caregiver does not fully understand the intense cravings many with FTD experience, especially for carbs and sugars. They do not realize that the person with FTD is not creating these cravings on their own. It is their brain. Brains need sugars to function. A brain that is not functioning properly causes the cravings. It seems that maybe it needs to be weighed as to whether the quality of life for the FTD'er is more important than gaining weight which will be lost later in the FTD process. Is it worth the fight? However, as I said, no absolute. If the one with FTD also has diabetes, the fight is definitely worth it. Each case is different. While the idea of locking up and depriving someone of food they are craving is, to me, abusive, there are times when not doing so is.
Yes, I do catch myself giving absolute advice. I am relieved when I realize it before I post. But, unfortunately, I have FTD and do slip up. I rely on others to tell me I am wrong or simply goofed up. I encourage everyone to question what I say or write. I do not become offended, at least after I realize I did say something inappropriate.
I also try to be tactful when I am taken aback by something said or written. My words and I are not always seen as such by the one I am saying it to, but I do hope everyone can realize that my suggestions and advice are always meant to help, not to offend.
I have the advantage (or is it disadvantage) of having been the caregiver for 3 family members who had the disease before me. There were more than three, but I was not the caregiver for the rest. Now that I have it, I am usually able to look at issues from both sides of the problem of caregiver vs. FTD'er. I have also researched dementia, Alzheimer's and FTD for 25 years while trying to understand and find ways to help my family members.
Am I an expert? Absolutely not! I have no medical background other than working in a hospital data processing department, marrying a hospital executive and hanging around with a lot of doctors through the years. I don't count managing a chiropractic practice or working in finance at a respiratory therapy company. The only benefit from all that experience is that I have a good understanding of medical technology and terminology. I also understand that medical personnel and physicians are human beings. The benefit of that is that I am not afraid to ask questions, discuss or question anything when dealing with doctors.
I wish I could have learned through osmosis from dealing with all these professionals, but we know it doesn't work that way. I am not afraid to research and question things but certainly do not do so at a level above that of any of us dealing with FTD.
I say all this because when I slip up and talk in absolutes, I hope everyone tells me I made a mistake. Also, to those who I question about the same thing, I hope they understand why I do. I am not questioning their knowledge, I am questioning how they share it.
Many bloggers have been posting very strong and absolute opinions. I know I have been guilty of making absolute statements once in while, but I really do try not to. As we all know, no two cases of FTD are the same. There are no absolutes. That is except for the absolute that FTD sucks all the way around.
When I see other bloggers and self-appointed "experts" asserting things like "No one with dementia should be on this medication." or "Your loved one obviously has xxx/diagnosis," I get frightened. We are not experts and there are perils in diagnosing when you don't have an M.D. or D.O. behind your name. I will admit I have caught myself coming downright close to that, but when I do, I back off and recommend that they discuss it with their or their loved one's doctor. Just because we have FTD or care for someone who does, it does not make us an expert. I try to use the word "possibly" or "could".
Medication that help one person with FTD may not help the next person. Answers to behavioral questions are the same. There are so many different ways for an FTD (or any dementia) patient to react to the same stimuli that, just as with medications, one way of handling a situation with one patient may worsen the situation for another.
Posts by caregivers often anger me. I am pretty sure everyone knows it when that happens. I try to bite my tongue, but sometimes I just cannot. No, the FTD patient is probably not plotting to make your life miserable. First of all, the FTD mind is usually not able to put together a plan to do so. More often, they are desperate for love, signs of affection, understanding or comfort. Also, you must include how frightened they can feel and lonely in their battle. "Why is this happening to me?" "Why does no one understand or tell me what and why these things are happening to me."
This is not to say that someone with FTD cannot try to gain these things when they are lacking. My mother, while in an assisted living facility that was near to my sister, would do things like hide her glasses. She could remember that the last time that happened, the staff called my sister and she came right over. To me, this was not being manipulative. It was just a case of her being lonely and actually able to come up with an excuse to get my sister to visit. She was not able to think through that if she was not there, my sister must be busy or not feeling well. That is too many layers of thought processes for her. She was lonely and came up with a way to get my sister to visit. The end! Of course it only worked once. She was not being selfish, not being mean, not being manipulative. She was lonely and bored.
I just have to share one of my favorite memories of my mom while she was in that assisted living facility. My husband and I had driven to Florida from Pennsylvania and were visiting with her as much as we could. After a few visits, my mom looked at my husband, put her hands on her hips and said "Just who are you and what do you want?" No, it wasn't funny that she was confused. It was that this was totally something she would have done and in the same manner in years past. My poor husband suffered the abuse of all of us asking him that until he died. Hey, you have to find humor where you can.
Recently, I read a post that said "No one with dementia should ever take this drug!" That is probably true of many drugs, such as the anesthesia medication Versed, but there are no absolutes. There are times that even Versed must be used despite the probable escalation of FTD symptoms.
The problem in this particular incident is that it was a prescription medication that helps a huge number of dementia patients. Without it, the patient can hurt themselves and others from lack of sleep, too much restlessness, agitation and anger. Yes, it would be ideal if no one with dementia had those symptoms or if those symptoms did not create dangerous situations. Perhaps a particular medication is not the ideal for FTD/dementia, but this is something that needs to be discussed with the patient's doctor. It must be weighed between the side effects of the medication versus the risks presented by not taking it. It must also be remembered how many different types of dementia exist. A medication that is good or harmful with one type of dementia may be the opposite for someone with a different type.
Caregivers can fall into the same trap with absolute advice such as "You MUST not allow this" or "You must stop allowing them to eat this" or "You must take this step to prevent injury." Just because something has worked in their situation, does not mean it will work for all.
A good example is one of my pet peeves... when caregivers talk about locking up food from the FTD'er. I have written about it many times. To me, that seems cruel and obvious that the caregiver does not fully understand the intense cravings many with FTD experience, especially for carbs and sugars. They do not realize that the person with FTD is not creating these cravings on their own. It is their brain. Brains need sugars to function. A brain that is not functioning properly causes the cravings. It seems that maybe it needs to be weighed as to whether the quality of life for the FTD'er is more important than gaining weight which will be lost later in the FTD process. Is it worth the fight? However, as I said, no absolute. If the one with FTD also has diabetes, the fight is definitely worth it. Each case is different. While the idea of locking up and depriving someone of food they are craving is, to me, abusive, there are times when not doing so is.
Yes, I do catch myself giving absolute advice. I am relieved when I realize it before I post. But, unfortunately, I have FTD and do slip up. I rely on others to tell me I am wrong or simply goofed up. I encourage everyone to question what I say or write. I do not become offended, at least after I realize I did say something inappropriate.
I also try to be tactful when I am taken aback by something said or written. My words and I are not always seen as such by the one I am saying it to, but I do hope everyone can realize that my suggestions and advice are always meant to help, not to offend.
I have the advantage (or is it disadvantage) of having been the caregiver for 3 family members who had the disease before me. There were more than three, but I was not the caregiver for the rest. Now that I have it, I am usually able to look at issues from both sides of the problem of caregiver vs. FTD'er. I have also researched dementia, Alzheimer's and FTD for 25 years while trying to understand and find ways to help my family members.
Am I an expert? Absolutely not! I have no medical background other than working in a hospital data processing department, marrying a hospital executive and hanging around with a lot of doctors through the years. I don't count managing a chiropractic practice or working in finance at a respiratory therapy company. The only benefit from all that experience is that I have a good understanding of medical technology and terminology. I also understand that medical personnel and physicians are human beings. The benefit of that is that I am not afraid to ask questions, discuss or question anything when dealing with doctors.
I wish I could have learned through osmosis from dealing with all these professionals, but we know it doesn't work that way. I am not afraid to research and question things but certainly do not do so at a level above that of any of us dealing with FTD.
I say all this because when I slip up and talk in absolutes, I hope everyone tells me I made a mistake. Also, to those who I question about the same thing, I hope they understand why I do. I am not questioning their knowledge, I am questioning how they share it.
Monday, May 18, 2020
Lessons Learned Through Change
Logging in, I was shocked that my last blog was nearly 2 months ago. It is difficult to realize how much moving involves, especially during a pandemic.
I have done interstate moves nine times, so it was easy for me to choose doing all the packing myself. My diagnosis was in 2011 so you would think I would have some idea of the limits on my energy and strength. I had a limitless supply of boxes, tape and other packing supplies, thanks to Amazon, my best friend. I did not have a limitless abount of energy. Since stores were almost all closed, this was a big help.
There were days that even assembling boxes was exhausting and some were downright difficult, especially the six foot tall ones. I made the mistake of assuming my "caregiver" would pitch in. She did do a good job of watching me though. It was frustrating enough, that I began to do the work when she was not there so I would not get as angry.
I have just told you the two lessons I actually learned and used. I learned to listen to my body and my brain. After several days, I had to start resting when my body and/or brain was tired. I kept at it long enough to realize that I could only work 4 or 5 hours a day, usually divided into two work sessions. Even with those limits, when either brain or body was exhausted, I actually took a day off to rest.
I did it! When everything was packed and the house clean, I was proud of myself. I also was able to part with gave a lot of "things". A few years into my FTD, I realized that things don't matter nearly as much as they used to. Knowing that FTD affects thinking processes, I would set things I didn't think I needed aside for a couple days. I would look at everything and reassess a few times. After that, I decided what to toss, what to donate and what to give away to friends/family. The local rescue mission grew to love me. I gave them two van loads of items they could sell. With the third and final load, they had to bring the small bus they use to transport the less fortunate to church. They filled it except for enough room for the three guys.
I also offered many items to family and friends. A lot got tossed but most everything else was taken by my "caregiver." I learned to accept help. My brother in law was always there when I needed heavy work. My sister was the one I needed to support me along the way, bringing me food when she knew I wasn't eating and suggesting a day off when she realized how tired I was before I did. It was a difficult, yet necessary, thing to learn.
Lesson number two is the reason I have "caregiver" in quotation marks. Mine was good while my husband was still living, but afterward, not so much at all. The one thing I will never forgive her for is that during the half hour break I took from lying next to his bed, she checked on him. She realized he was finally giving up the battle and would die within minutes. She stayed with him "until she was sure he was gone." To deprive me of that moment, to be with him, is totally unforgivable. I had spent 4 days sitting or lying next to his bed, holding his hand. I left his side for a few minutes to rest my back. I don't understand how she could have done that unforgivable action. I did manage to make it less painful by closing the door to his room and bathing him before the necessary people arrived.
After his passing, I will admit, she broke her hand. However, considering she had previously continued to work after full shoulder replacement surgery, I was angry that she stopped doing anything.
This is a very important lesson. If you hire a caregiver, make sure s/he is giving care. Caregivers, please observe them often and at different times a day. Unfortunately, I did not listen to my sister, daughter and friends who all tried to tell me how she was taking advantage of me for the five months after my husband's death. I hate any change and this would have been a major one to me. To those with FTD, when more than one is telling you someone is taking advantage of you, please consider that they just may be right. It took me realizing that while I was pushing myself beyond my limits, she was sitting and watching soap operas. I never fired her until a week before the move.
The thing that decided I couldn't even keep her for another week was a biggie. The home buyer's house was to come the next week on Wednesday. When she left on Friday, I told her to be prepared to thoroughly clean the house. Surprise! Instead of showing up 11:00, she didn't appear until 2:00. Of course, I had nearly everything done by then. I had saved the vacuuming for her to do and, even then, I needed to redo it the next day even though I had broken my foot over the weekend. So instead of stressing the broken bones on just Monday, I had to do it again on Tuesday.
In the end, the home sale went perfectly and I am now in beautiful North Carolina and happier and more relaxed than I have been in two or three years.
I hope you picked up on the lessons I was trying to share. For caregivers and/or family member: If you have someone helping in your home, please check on them when they aren't expecting you to and do it often. If your FTD'er is like me, they just might cover for them just to keep the peace and avoid change. Offer help when your FTD'er appears to need it, but don't take over unless there is significant danger. I recognize that it is often easier to take over, but it surely was a benefit to me when my sister forced herself to sit and watch, only offering occasional help when she believed I was endangering myself.
For those with FTD: as much as we hate change, sometimes it is a good thing. I kept paying my "caregiver" for nearly a year when I should not have. Change is often a good thing. Don't be afraid to take on tasks you want to do as long as it doesn't involve knives or power tools, etc. Then again, seeing as how I trip over air, maybe keep the tasks simple. Packing boxes was fairly safe for me, I only cut myself one time and it wasn't even bad. I cut it on the metal edge of the tape dispenser. There's no way we can know when we will have an accident. Yet I really believe that we often just need to do it by ourselves.
For family and friends, besides encouraging you to spend time with your FTD'er, keep an eye open and if you suspect something is wrong tell both the caregiver and the FTD'er. For me, I would have to add "often" because I sure don't catch on right away... or even after months of being told.
What else did I learn? The biggie was that most things don't matter to me. I kept small reminders of family and friends but was able to part with things I was keeping just because they had belonged to someone I loved. I actually learned that it is okay to ask for help or to at least accept it the third or fourth time it was offered.
The best thing I learned? It sure feels good to have time, energy and my brain functioning enough to blog again. Thanks for waiting for me!
I have done interstate moves nine times, so it was easy for me to choose doing all the packing myself. My diagnosis was in 2011 so you would think I would have some idea of the limits on my energy and strength. I had a limitless supply of boxes, tape and other packing supplies, thanks to Amazon, my best friend. I did not have a limitless abount of energy. Since stores were almost all closed, this was a big help.
There were days that even assembling boxes was exhausting and some were downright difficult, especially the six foot tall ones. I made the mistake of assuming my "caregiver" would pitch in. She did do a good job of watching me though. It was frustrating enough, that I began to do the work when she was not there so I would not get as angry.
I have just told you the two lessons I actually learned and used. I learned to listen to my body and my brain. After several days, I had to start resting when my body and/or brain was tired. I kept at it long enough to realize that I could only work 4 or 5 hours a day, usually divided into two work sessions. Even with those limits, when either brain or body was exhausted, I actually took a day off to rest.
I did it! When everything was packed and the house clean, I was proud of myself. I also was able to part with gave a lot of "things". A few years into my FTD, I realized that things don't matter nearly as much as they used to. Knowing that FTD affects thinking processes, I would set things I didn't think I needed aside for a couple days. I would look at everything and reassess a few times. After that, I decided what to toss, what to donate and what to give away to friends/family. The local rescue mission grew to love me. I gave them two van loads of items they could sell. With the third and final load, they had to bring the small bus they use to transport the less fortunate to church. They filled it except for enough room for the three guys.
I also offered many items to family and friends. A lot got tossed but most everything else was taken by my "caregiver." I learned to accept help. My brother in law was always there when I needed heavy work. My sister was the one I needed to support me along the way, bringing me food when she knew I wasn't eating and suggesting a day off when she realized how tired I was before I did. It was a difficult, yet necessary, thing to learn.
Lesson number two is the reason I have "caregiver" in quotation marks. Mine was good while my husband was still living, but afterward, not so much at all. The one thing I will never forgive her for is that during the half hour break I took from lying next to his bed, she checked on him. She realized he was finally giving up the battle and would die within minutes. She stayed with him "until she was sure he was gone." To deprive me of that moment, to be with him, is totally unforgivable. I had spent 4 days sitting or lying next to his bed, holding his hand. I left his side for a few minutes to rest my back. I don't understand how she could have done that unforgivable action. I did manage to make it less painful by closing the door to his room and bathing him before the necessary people arrived.
After his passing, I will admit, she broke her hand. However, considering she had previously continued to work after full shoulder replacement surgery, I was angry that she stopped doing anything.
This is a very important lesson. If you hire a caregiver, make sure s/he is giving care. Caregivers, please observe them often and at different times a day. Unfortunately, I did not listen to my sister, daughter and friends who all tried to tell me how she was taking advantage of me for the five months after my husband's death. I hate any change and this would have been a major one to me. To those with FTD, when more than one is telling you someone is taking advantage of you, please consider that they just may be right. It took me realizing that while I was pushing myself beyond my limits, she was sitting and watching soap operas. I never fired her until a week before the move.
The thing that decided I couldn't even keep her for another week was a biggie. The home buyer's house was to come the next week on Wednesday. When she left on Friday, I told her to be prepared to thoroughly clean the house. Surprise! Instead of showing up 11:00, she didn't appear until 2:00. Of course, I had nearly everything done by then. I had saved the vacuuming for her to do and, even then, I needed to redo it the next day even though I had broken my foot over the weekend. So instead of stressing the broken bones on just Monday, I had to do it again on Tuesday.
In the end, the home sale went perfectly and I am now in beautiful North Carolina and happier and more relaxed than I have been in two or three years.
I hope you picked up on the lessons I was trying to share. For caregivers and/or family member: If you have someone helping in your home, please check on them when they aren't expecting you to and do it often. If your FTD'er is like me, they just might cover for them just to keep the peace and avoid change. Offer help when your FTD'er appears to need it, but don't take over unless there is significant danger. I recognize that it is often easier to take over, but it surely was a benefit to me when my sister forced herself to sit and watch, only offering occasional help when she believed I was endangering myself.
For those with FTD: as much as we hate change, sometimes it is a good thing. I kept paying my "caregiver" for nearly a year when I should not have. Change is often a good thing. Don't be afraid to take on tasks you want to do as long as it doesn't involve knives or power tools, etc. Then again, seeing as how I trip over air, maybe keep the tasks simple. Packing boxes was fairly safe for me, I only cut myself one time and it wasn't even bad. I cut it on the metal edge of the tape dispenser. There's no way we can know when we will have an accident. Yet I really believe that we often just need to do it by ourselves.
For family and friends, besides encouraging you to spend time with your FTD'er, keep an eye open and if you suspect something is wrong tell both the caregiver and the FTD'er. For me, I would have to add "often" because I sure don't catch on right away... or even after months of being told.
What else did I learn? The biggie was that most things don't matter to me. I kept small reminders of family and friends but was able to part with things I was keeping just because they had belonged to someone I loved. I actually learned that it is okay to ask for help or to at least accept it the third or fourth time it was offered.
The best thing I learned? It sure feels good to have time, energy and my brain functioning enough to blog again. Thanks for waiting for me!
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