It is about time that I write another blog entry dedicated to the caregivers. The role of caregiver or care partner is one of the most difficult jobs there is. You need to have the utmost patience, a mind reading ability, the muscles of a body builder and the ability to go without sleep. It is often a thankless job as well. I have extreme admiration for most caregivers. I will not address the caregivers that I find do not care or are totally lacking because their numbers are not nearly as large as the good ones.
I would like to address several issues. Some are questions that I am often asked by caregivers and some are just things that I truly wish could be handled differently.
One of my pet peeves and a habit that many caregivers need to break is the use of the words "won't", "insists on doing", "refuses to do" and any variation on them. It can be something as extreme as "s/he won't swallow her food, just hoards it in her mouth." It is not that s/he won't swallow, it is that s/he cannot swallow. It isn't always something as extreme as that example. It can be something like "s/he refuses to brush his teeth. It is most likely that he cannot brush his teeth because he does not remember that he should or how to do it. Some caregivers will put notes on the bathroom mirror to remind their loved one to brush their teeth. That is great in concept and probably makes a difference in the early stages. Unfortunately, eventually, they will not understand why the note is there, what it says or how they are supposed to do that anyway.
The FTD brain works much differently than a healthy brain. It reaches the point that "brush your teeth" is too overwhelming. It can only handle, "find your toothbrush, put a small dab of toothpaste on your toothbrush, wet the toothbrush, etc." It is not only overwhelming, but it can be extremely frustrating as well. When the FTD brain gets frustrated, lashing out often follows. It can be yelling, throwing the toothbrush away or just refusing to do anything. It is not that they don't want to brush their teeth because they probably feel a little furry, they just can't. The same principals apply to trying to get them to bathe or shower, make their bed or just about any activity you want to encourage them to do. Sometimes, it might help if you stand and brush your teeth at the same time so they can mimic what you are doing. I hate it when someone compares taking care of someone with FTD to caring for a child, but I am going to. It does help to remember how you would teach a child to do whatever it is you are wanting them to do. Please, though, do not talk down to the FTD'er or treat them like a child!
I remember, way back in my high school days, an assignment given to us by my favorite English teacher. She would have us write a description of common items and to describe it as though someone came from outerspace and had absolutely no clue about what it is. The one I remember being the most difficult was "water." I would often think about that when I was acting as a caregiver for the family members who dealt with FTD before I did.
So often, caregivers do not totally understand that too many things going on quickly become overwhelming and prevent the brain to do much of anything. I call it "going into the spin cycle" because, to me, it feels like my brain is spinning but can't find a place to stop where anything makes sense anymore. Music, pets, children, television, lawn mowers, anything that makes noise or anything that draws the eyes away from what they are trying to focus on are all things that a normal brain takes for granted and just blocks out. Temperatures can do it too, like if they are sitting near the air flow from the air conditioner or heat vent. The FTD brain cannot block the distractions out. I know of one caregiver who would put her mother in a chair in front of the television and leave her there most of the day. She truly thought that entertaining her mother with the television was a good thing that she was doing. She would also open a window next to her mothers so she could "get some fresh air." After a couple hours, her mother would become very agitated and start yelling. She didn't know how to explain that the television was overwhelming her and she could not handle it. It was exacerbated by the noises and commotion coming in through the window.
Caregivers often complain because their loved one acts inappropriately at restaurants or in other social situations. They may even accuse their loved one of trying to get attention. Assuming that the loved one is not taken to restaurants several times a week, the odds are not very good that they will remember how to act in a restaurant. It is a strange place, with a lot of strangers around, perhaps music playing in the background and other people talking. Add in having to make a choice from the menu and having to talk to strangers. I don't say that you shouldn't go to restaurants. My husband and I go out at least once a week. We do not, though, go to "fancy" restaurants anymore where I might feel embarrassed. Yesterday, I was at a restaurant with three friends. I was on the far side of a booth, so the waitress had handed me a bowl of soup. I joined in to the conversation and totally forgot I was holding the soup. It ended up splashed all over my clean white shirt. Of course it was tomato based so it showed up quite well. We were in a family-style restaurant and it was no big deal. The waitress grabbed a stack of napkins and offered to help. The three friends with me all know that I have FTD and care enough to have learned enough about it to realize that it wasn't a "stupid" thing that I did. It was just one of those times that boils down to the "one thing at a time" concept. I should have set down the soup before trying to talk to someone, but my brain was not going to realize that. It really helps if the caregiver pays attention to the one with FTD. If that had happened to me in a fine dining restaurant, I would have been mortified. If I had been out with my husband, he would probably have helped me set down the bowl as soon as I had accepted it from the waitress.
Another complaint that crops up a lot is communication difficulties. I am not qualified to talk about the FTD'ers who have aphasia and have severe difficulties speaking because I have not reached that point and the family members I cared for prior to my diagnosis did not have it either. I do have trouble speaking, though, and it gets much worse when I am stressed. I can not get words out and it sounds like I am stuttering and I will leave out words. Instead of saying "close the door for me" it will come out as "cl, cl, cl, cl, close d, d, d, d, door." I also forget words and it can take me a while to remember the word or find one to substitute. When someone tries to fill in the words for me, it does not help. It actually makes it worse because I become more frustrated. Odds are that the other person comes up with a totally different take on what I am trying to say. It also distracts me enough that I can not focus on what I am trying to say. It is not unusual, when someone is "trying to help" that I will just quit trying. It is interesting to me that when I do that, I make a motion like I am trying to erase a blackboard, or whiteboard for those not old enough to remember blackboards. I even remember when the blackboards were actually made from slate!
I am afraid I have not provided many answers here. The bottom line is to keep it simple, break things down into steps (the one thing at a time concept) and do not expect more than your loved one can offer. Also, it is important to observe what is happening so that you may understand why they are reacting the way they are or why they are lashing out. Oh, and try to find that patience of Job.
It is also a good idea to discuss any new developments with the doctor. They may indicate something to the doctor that we would not think of. One of the biggies is UTI's. I did not understand why people on the support groups would quickly ask if they had checked their loved one for a urinary tract infection. It seemed like that was a stretch at best. Then I read something that changed my mind. It explained to me that older people and people with chronic diseases have much lower resistance to infections. The infections also have more impact on their bodies. If their body is busy fighting off an infection, especially a UTI, it is depleting their ability to work properly in other areas. It can increase just about any symptom of FTD, increase agitation adding to the stress of the disease. It can also cause just enough discomfort to distract their brain from functioning as well as it had been. The good news is that once the UTI is cleared up, they most often get back to where they were before the infection. It also helps that you can now buy urine test strips in just about any pharmacy so you may be able to avoid trips to the doctor.
Also, respite care is vital for the caregiver. You cannot do it all for very long until you become worthless to yourself, the one you are caring for and everyone else in your life. It can be difficult to ask for or to accept help. You must force yourself to do it. Ask friends to come sit with your loved one for an afternoon so you can go have a massage or just sit in the park. Ask family members to come stay with them for a weekend. Check out respite care that may be available in your area at nursing home or other places. Adult day care is often an answer as well.
This had not crossed my mind when I started this blog entry, but did just I was wrapping it up. Here is the link to a brochure I wrote, called "Coping with FTD." It contains some pretty basic and common sense tips that I have after being the caregiver for family members who had FTD and now with me having it as well. I hope it helps.
www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf
Friday, June 30, 2017
Saturday, June 24, 2017
Way Too Stubborn
FTD has a way of making our lives extremely difficult. Speech issues, mobility issues, social issues, medical issues and on and on. I don't think I need to go into details on each one since I have done that repeatedly in the past. There is one that I need to talk about and that is anger and frustration.
I get angry and frustrated because I have difficulty communicating through speech. I get angry and frustrated by not being able to walk well. I get angry and frustrated because I can no longer satisfy my incessant need for independence. I get angry and frustrated when I have to ask someone else to do just about anything for me. I guess that goes hand-in-hand with my need to be independent and to do it all my way and by myself.
A couple weeks ago, I wrote my blog entry about finally accepting that I can not do it all myself anymore. I was diagnosed back in 2010. So it took me seven years to finally admit it, not to bad for me. I have broken down and hired someone to clean my house, do the yard work and the landscaping work (trimming, weeding, mulching). Now, I admit, I am quite picky. I want everything done the way I want it and when I want it done.
The house cleaner came the first time a week and a half ago. The best way I can sum it up is that she did an adequate job. I accepted that, touched up a couple things she missed and made a note of what to explain further to her next time. To begin with, I was really proud of myself for accepting that I needed help with it and really proud that I was not critical of what she did. It helps that she is a super sweet older lady.
I have been hiring a friend for several years now to come trim all the shrubbery, kill the weeds and spread a lot of mulch. It's kind of funny, actually, that we pay him to spread a ton of mulch (not literally a ton, just seems like it) then turn around and have our yard guy do a fall clean up before winter. He comes with a really strong blower to drive all the fallen leaves into the woods. Unfortunately, he also sends the mulch right along with them. See, I can accept some things! Back to the friend, it's been a month and he has not come to do the work. In his defense, it seems to be raining five days out of seven and he works long hours at his real job. Despite that, it was really getting to me that our property was looking a little ratty.
I came up with a compromise. I had already pulled weeds and trimmed in the back of the house that I see all the time from the family room and deck. That helped sooth me for a while. Then it started bothering me how ratty the property at the end of the driveway looked to anyone driving in. So I asked the lawn guy to weed whack the hill while he was here mowing. Now, this is not a huge piece of property. We're probably talking a 10' x 12' slope and he has done this a couple times a year for the past several. My husband asked him to do it this week. The next time I went out and saw it, he had trimmed the grassy area above it and had not touched the area that was getting to be overgrown. Did he not look?
So, this morning, after a few days of getting angry and tied up in knots every time I was in the driveway, I went on a weeding rampage. I crawled and scooted myself all over that hillside and got it to be looking presentable. God love my husband, he didn't say a word, just kept coming and emptying my weed bucket. He even took me out for an early dinner once I finished. I think he did it to keep me from going into another frenzy.
Now, after this long winded story of my stubbornness and not so much ability to accept that which I cannot do, I will get to the point. I get so frustrated and angry that it actually worsens my FTD symptoms. I had a lot of trouble walking from the car to the restaurant and through to our table. I had trouble ordering and making requests to the waitress. I know it will be a few days now until my FTD symptoms revert back to how they were, if they fully do, before my rampage.
Those of us with FTD pay a huge price for pushing ourselves to try and be like we used to be before FTD. The price is both physical, with worsening symptoms, and emotional when realizing all over again that we have limitations and can no longer do what we want.
One good thing this week... My sister is always offering to help and I am always refusing. I am supposed to be the strong one who does things for the rest of the family, at least in my mind. This week, while we went to an out of town doctor's appointment, she came and scrubbed the outside of all the gutters around the house. This was pretty much an all day task and one that we could not do. When she was finished and was packing up to go, she looked me in the eyes and said "Thank you for allowing me to help you."
I am tearing up just typing these words. It probably won't make much of a dent in my resistance to accepting her help, but "Wow," maybe I am just a tad too stubborn. Maybe if it happens another 50 times?
I get angry and frustrated because I have difficulty communicating through speech. I get angry and frustrated by not being able to walk well. I get angry and frustrated because I can no longer satisfy my incessant need for independence. I get angry and frustrated when I have to ask someone else to do just about anything for me. I guess that goes hand-in-hand with my need to be independent and to do it all my way and by myself.
A couple weeks ago, I wrote my blog entry about finally accepting that I can not do it all myself anymore. I was diagnosed back in 2010. So it took me seven years to finally admit it, not to bad for me. I have broken down and hired someone to clean my house, do the yard work and the landscaping work (trimming, weeding, mulching). Now, I admit, I am quite picky. I want everything done the way I want it and when I want it done.
The house cleaner came the first time a week and a half ago. The best way I can sum it up is that she did an adequate job. I accepted that, touched up a couple things she missed and made a note of what to explain further to her next time. To begin with, I was really proud of myself for accepting that I needed help with it and really proud that I was not critical of what she did. It helps that she is a super sweet older lady.
I have been hiring a friend for several years now to come trim all the shrubbery, kill the weeds and spread a lot of mulch. It's kind of funny, actually, that we pay him to spread a ton of mulch (not literally a ton, just seems like it) then turn around and have our yard guy do a fall clean up before winter. He comes with a really strong blower to drive all the fallen leaves into the woods. Unfortunately, he also sends the mulch right along with them. See, I can accept some things! Back to the friend, it's been a month and he has not come to do the work. In his defense, it seems to be raining five days out of seven and he works long hours at his real job. Despite that, it was really getting to me that our property was looking a little ratty.
I came up with a compromise. I had already pulled weeds and trimmed in the back of the house that I see all the time from the family room and deck. That helped sooth me for a while. Then it started bothering me how ratty the property at the end of the driveway looked to anyone driving in. So I asked the lawn guy to weed whack the hill while he was here mowing. Now, this is not a huge piece of property. We're probably talking a 10' x 12' slope and he has done this a couple times a year for the past several. My husband asked him to do it this week. The next time I went out and saw it, he had trimmed the grassy area above it and had not touched the area that was getting to be overgrown. Did he not look?
So, this morning, after a few days of getting angry and tied up in knots every time I was in the driveway, I went on a weeding rampage. I crawled and scooted myself all over that hillside and got it to be looking presentable. God love my husband, he didn't say a word, just kept coming and emptying my weed bucket. He even took me out for an early dinner once I finished. I think he did it to keep me from going into another frenzy.
Now, after this long winded story of my stubbornness and not so much ability to accept that which I cannot do, I will get to the point. I get so frustrated and angry that it actually worsens my FTD symptoms. I had a lot of trouble walking from the car to the restaurant and through to our table. I had trouble ordering and making requests to the waitress. I know it will be a few days now until my FTD symptoms revert back to how they were, if they fully do, before my rampage.
Those of us with FTD pay a huge price for pushing ourselves to try and be like we used to be before FTD. The price is both physical, with worsening symptoms, and emotional when realizing all over again that we have limitations and can no longer do what we want.
One good thing this week... My sister is always offering to help and I am always refusing. I am supposed to be the strong one who does things for the rest of the family, at least in my mind. This week, while we went to an out of town doctor's appointment, she came and scrubbed the outside of all the gutters around the house. This was pretty much an all day task and one that we could not do. When she was finished and was packing up to go, she looked me in the eyes and said "Thank you for allowing me to help you."
I am tearing up just typing these words. It probably won't make much of a dent in my resistance to accepting her help, but "Wow," maybe I am just a tad too stubborn. Maybe if it happens another 50 times?
Saturday, June 17, 2017
I Need an FTD Filter
One of the problems with FTD is that I cannot figure things out anymore. When a person without FTD wants to solve a problem, usually they seek more information to do so. For me, and others with FTD, seeking out more information may actually make things worse. The AFTD has a webinar on its site right now about the 4 different types of bvFTD (behavioral variant) they have isolated. I finally sat down to listen to it. It started out fascinating me, but after less than10 minutes, I had to stop listening. As the speaker kept presenting more and more information on the study and its results, I could feel my brain becoming overloaded. I had developed a severe headache in my left temporal area. As each new piece of information was presented, the pain worsened significantly and the new info was not being absorbed. To put it simply, my brain could not handle any additional information and was at the point that my entire brain felt scrambled. Nothing made sense at all, not just the new information.
My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.
This past week, something happened that, to me, seemed to parallel this thinking.
My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.
The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.
The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.
The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!
I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again. He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.
Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.
If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need. Now, that would be awesome!
My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.
This past week, something happened that, to me, seemed to parallel this thinking.
My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.
The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.
The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.
The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!
I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again. He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.
Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.
If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need. Now, that would be awesome!
Saturday, June 10, 2017
Okay, I Cannot Do It All
I have finally accepted that I cannot do it all. I have hired someone to come in and give my house a good cleaning once a month. I figure I can keep up with it in between with quick dustings. She is coming for the first time this week so now I have to work on accepting that no one else will do it the same way I do. I figure some of her ways will be not as good as mine but just as many will be better than how I do it.
This may seem like a trivial thing to be doing, but it is one of the most difficult things I have done since being diagnosed six or seven years ago. It is really tough for me to admit I need assistance. Admitting that seems to be like giving in to the disease, this disease I have been fighting tooth and nail. Even though I know I am being ridiculous, it's tough. I will have to stay out of her way, not to mention keeping my husband out of her way. I will admit, though, I already told them that no way will I make anyone clean my toilets. They found that quite funny and insisted they were used to it but I will be cleaning the toilets before she arrives just the same. I'm just not ready to take it that far.
Hopefully, taking this step will stop me from looking around and feeling helpless and worthless because I can't keep up with the house.
Next challenge is the yard. The friend who comes and trims my bushes and spreads mulch has committed to doing it, but is working long hours and has not made it yet. Every time I look out my sliding door to the deck and every time we pull into the driveway, I get extremely stressed that it hasn't been done yet. Yes, I could hire someone else, but he does it very well and very inexpensively.
I am dealing with the stress of this issue a different way. Every day for the past week, I went out and did a little trimming and weeding. It took me a full week because I can only manage an hour or so each day before my FTD body and brain give out. What I have done is trimming and weeding the area that I can see out my patio door to the deck and the area at the back of the driveway that we see when we pull in to it. I finished doing that yesterday so hopefully I can relax a little about that. I also keep up with my flower garden beside the deck so I can even go out onto the deck and relax for a while without stressing.
This leads me to another phenomenon. I am sensitive to most anything... laundry products, soaps, lotions, perfumes and on and on. Oh, and poison ivy, definitely poison ivy. So far this year I have avoided that. (Insert Knock on Wood here.) Mosquito bites have always been worse for me than most people. They stay puffed up, red and itchy for about a week. Now, as I have said before, FTD magnifies any problem or irritation for me. My brain reacts more strongly to distractions, irritants and anything that triggers a reaction in the brain. That is why I avoid crowds (meaning more than 2 or 3 people), loud noises, even action packed television shows.
I know all this, but I never thought about something as simple as mosquito bites. When I get them now, it is akin to a constant zapping of an electrical stimulation along with the itch. It is constant and my brain cannot ignore them and is in a constant agitated state. I hope this is an adequate definition of what it feels like. I have been driven several times to taking a mild sedative to calm down the nerves on my skin and in my brain. This is not something that would have occurred to me as a possibility and is new to me this year.
I accomplished something this week that really boosted my confidence in my ability to still do things. I saw a recipe online for Roasted Garlic Rosemary Artisan Bread. It had a lot of steps to the recipe but they were all simple ones. It is a no-knead bread which made it even easier. Even though it was a 24-hour process, it went very well and I got only one burn. That may be a record for the past couple years. It was also delicious. That first slice after it came out of the oven, slathered with butter, was scrumptious!
I will admit that I have not shared any with my husband. When I offered him a slice when it was fresh from the oven, he requested peanut butter and jelly on it. Did I mention it was roasted garlic/rosemary bread? So, baking that bread also offered some comic relief to the day! Oh, and please don't tell my husband I told you this part of the story. Hopefully when he reads this blog entry, he will get tired of it before the end...
This may seem like a trivial thing to be doing, but it is one of the most difficult things I have done since being diagnosed six or seven years ago. It is really tough for me to admit I need assistance. Admitting that seems to be like giving in to the disease, this disease I have been fighting tooth and nail. Even though I know I am being ridiculous, it's tough. I will have to stay out of her way, not to mention keeping my husband out of her way. I will admit, though, I already told them that no way will I make anyone clean my toilets. They found that quite funny and insisted they were used to it but I will be cleaning the toilets before she arrives just the same. I'm just not ready to take it that far.
Hopefully, taking this step will stop me from looking around and feeling helpless and worthless because I can't keep up with the house.
Next challenge is the yard. The friend who comes and trims my bushes and spreads mulch has committed to doing it, but is working long hours and has not made it yet. Every time I look out my sliding door to the deck and every time we pull into the driveway, I get extremely stressed that it hasn't been done yet. Yes, I could hire someone else, but he does it very well and very inexpensively.
I am dealing with the stress of this issue a different way. Every day for the past week, I went out and did a little trimming and weeding. It took me a full week because I can only manage an hour or so each day before my FTD body and brain give out. What I have done is trimming and weeding the area that I can see out my patio door to the deck and the area at the back of the driveway that we see when we pull in to it. I finished doing that yesterday so hopefully I can relax a little about that. I also keep up with my flower garden beside the deck so I can even go out onto the deck and relax for a while without stressing.
This leads me to another phenomenon. I am sensitive to most anything... laundry products, soaps, lotions, perfumes and on and on. Oh, and poison ivy, definitely poison ivy. So far this year I have avoided that. (Insert Knock on Wood here.) Mosquito bites have always been worse for me than most people. They stay puffed up, red and itchy for about a week. Now, as I have said before, FTD magnifies any problem or irritation for me. My brain reacts more strongly to distractions, irritants and anything that triggers a reaction in the brain. That is why I avoid crowds (meaning more than 2 or 3 people), loud noises, even action packed television shows.
I know all this, but I never thought about something as simple as mosquito bites. When I get them now, it is akin to a constant zapping of an electrical stimulation along with the itch. It is constant and my brain cannot ignore them and is in a constant agitated state. I hope this is an adequate definition of what it feels like. I have been driven several times to taking a mild sedative to calm down the nerves on my skin and in my brain. This is not something that would have occurred to me as a possibility and is new to me this year.
I accomplished something this week that really boosted my confidence in my ability to still do things. I saw a recipe online for Roasted Garlic Rosemary Artisan Bread. It had a lot of steps to the recipe but they were all simple ones. It is a no-knead bread which made it even easier. Even though it was a 24-hour process, it went very well and I got only one burn. That may be a record for the past couple years. It was also delicious. That first slice after it came out of the oven, slathered with butter, was scrumptious!
I will admit that I have not shared any with my husband. When I offered him a slice when it was fresh from the oven, he requested peanut butter and jelly on it. Did I mention it was roasted garlic/rosemary bread? So, baking that bread also offered some comic relief to the day! Oh, and please don't tell my husband I told you this part of the story. Hopefully when he reads this blog entry, he will get tired of it before the end...
Sunday, June 4, 2017
Catastrophic Reactions
Today, a friend posted something from ThePurpleSherpa.org which is an excellent resource for caregivers. I am often encouraged by their website because they often include descriptions of why we with FTD react the way we do. It is heartening to know that people do understand what we are dealing with and why we are the way we are.
What she posted today was "Catastrophic reactions are emotional reactions or outbursts that are out of proportion with the stimulus. They are common among people who have dementia and are usually a sign that the person is overwhelmed, frightened, unable to cope with a change. To avoid them, speak calmly, avoid giving too many choices and identify what triggers your loved one."
They get it. They really, really get it! This is something I repeatedly try to explain to my caregiving husband, my family and friends. I wish I could say that I never have reactions like this, but they are almost a daily occurrence. The most frequent cause for me is the one at a time principle that I am often preaching. If I am doing most anything at all, when you add something onto it, I go into overload. I will not respond properly to questions or understand what is being said. This has been getting progressively worse along with the disease itself. If I am trying to read, listening to music or most any thing that seems innocuous to observers, it is taking all of my concentration. If you break it down, not only am I doing the task I mention, but often also thinking about things. My reduced brain capacity is totally occupied because that is what it takes to do what I am doing. Trying to ask even a simple question takes the risk of me exploding.
As this quote says, it is because it is overwhelming, plain and simple. It can cause me to become frustrated or angry (at the world, usually not at the person asking). Part of the reason is that I know that I should be able to deal with it and cannot. Most often the frustration and anger is at myself and at the disease. It is important for everyone around me to know that when I do explode, it is not necessarily directed at them. It is just that the one more little thing being presented to me is the proverbial straw that broke the camel's back. While the one interrupting me understands this in theory, it is difficult to remain calm when I am yelling, slamming things or worse.
It was a such coincidence that my friend posted this today because it is related to what I was going to write about today. I was planning on using this past week as a perfect example of me not being able to deal with more than one thing.
Three weeks ago, I had a medical test performed on me. That was a stress for that day, but the next 10 days waiting for the results were not because I knew it was a "just in case" test that was performed plus there was a very valid reason for the results taking so long. When I finally got the call with the results is when it started getting stressful. They wanted another test because something had shown up on the first go around. This was a little more than a week ago. They got me scheduled for the second test just two days after that call. I still wasn't concerned and was not feeling anxious except for the disruption to my schedule by the unexpected medical visits. Any disruption in routine can be frustrating.
Unfortunately, that second test was inconclusive and I was told the next step was a small surgical procedure. This particular testing is only done one day out of every two weeks, but they had room for me in the testing day coming up in five days. On that day, I was home within six hours of the time I reported to the hospital. It was just stressful enough that the rest of that day plus the following day, I felt confused and had the feeling that something was wrong. Fortunately, my husband did understand that all the times I blew up at him was me being overwhelmed. We have made an effort since then to not add anything to my schedule and not tried to add any activities here at home.
We still have two days to wait for the results so we will continue this relaxed schedule. My sister stepped up to the bat and took me in for the procedure because my husband was unable to do so. My wonderful friend also offered to take me to the appointment. It is awesome to have people to rely on. My sister also brought us a lot of food that we have supplemented with carry out food that my husband has gone out for so I was able to follow the 3 days of restrictions. Finally, today, I am cooking, but it is one of our favorite and easiest to prepare meals and one that is conducive to us doing it together. My husband has been perfectly following the advice given by ThePurpleSherpa.org even before I saw it. He has tried to keep our routine a little more relaxed than usual and has been understanding about the extra stress this has caused me.
It was such a coincidence that I saw this post shortly before I was going to write this. It made it a little long but, hopefully, made both the helpful advice and my actual events easier to understand. To the caregivers out there, please take this advice to heart. It is a necessary thing to understand if you want any calmness in your lives. It is also necessary for my husband and I to continue remembering as we go through the next few days.
What she posted today was "Catastrophic reactions are emotional reactions or outbursts that are out of proportion with the stimulus. They are common among people who have dementia and are usually a sign that the person is overwhelmed, frightened, unable to cope with a change. To avoid them, speak calmly, avoid giving too many choices and identify what triggers your loved one."
They get it. They really, really get it! This is something I repeatedly try to explain to my caregiving husband, my family and friends. I wish I could say that I never have reactions like this, but they are almost a daily occurrence. The most frequent cause for me is the one at a time principle that I am often preaching. If I am doing most anything at all, when you add something onto it, I go into overload. I will not respond properly to questions or understand what is being said. This has been getting progressively worse along with the disease itself. If I am trying to read, listening to music or most any thing that seems innocuous to observers, it is taking all of my concentration. If you break it down, not only am I doing the task I mention, but often also thinking about things. My reduced brain capacity is totally occupied because that is what it takes to do what I am doing. Trying to ask even a simple question takes the risk of me exploding.
As this quote says, it is because it is overwhelming, plain and simple. It can cause me to become frustrated or angry (at the world, usually not at the person asking). Part of the reason is that I know that I should be able to deal with it and cannot. Most often the frustration and anger is at myself and at the disease. It is important for everyone around me to know that when I do explode, it is not necessarily directed at them. It is just that the one more little thing being presented to me is the proverbial straw that broke the camel's back. While the one interrupting me understands this in theory, it is difficult to remain calm when I am yelling, slamming things or worse.
It was a such coincidence that my friend posted this today because it is related to what I was going to write about today. I was planning on using this past week as a perfect example of me not being able to deal with more than one thing.
Three weeks ago, I had a medical test performed on me. That was a stress for that day, but the next 10 days waiting for the results were not because I knew it was a "just in case" test that was performed plus there was a very valid reason for the results taking so long. When I finally got the call with the results is when it started getting stressful. They wanted another test because something had shown up on the first go around. This was a little more than a week ago. They got me scheduled for the second test just two days after that call. I still wasn't concerned and was not feeling anxious except for the disruption to my schedule by the unexpected medical visits. Any disruption in routine can be frustrating.
Unfortunately, that second test was inconclusive and I was told the next step was a small surgical procedure. This particular testing is only done one day out of every two weeks, but they had room for me in the testing day coming up in five days. On that day, I was home within six hours of the time I reported to the hospital. It was just stressful enough that the rest of that day plus the following day, I felt confused and had the feeling that something was wrong. Fortunately, my husband did understand that all the times I blew up at him was me being overwhelmed. We have made an effort since then to not add anything to my schedule and not tried to add any activities here at home.
We still have two days to wait for the results so we will continue this relaxed schedule. My sister stepped up to the bat and took me in for the procedure because my husband was unable to do so. My wonderful friend also offered to take me to the appointment. It is awesome to have people to rely on. My sister also brought us a lot of food that we have supplemented with carry out food that my husband has gone out for so I was able to follow the 3 days of restrictions. Finally, today, I am cooking, but it is one of our favorite and easiest to prepare meals and one that is conducive to us doing it together. My husband has been perfectly following the advice given by ThePurpleSherpa.org even before I saw it. He has tried to keep our routine a little more relaxed than usual and has been understanding about the extra stress this has caused me.
It was such a coincidence that I saw this post shortly before I was going to write this. It made it a little long but, hopefully, made both the helpful advice and my actual events easier to understand. To the caregivers out there, please take this advice to heart. It is a necessary thing to understand if you want any calmness in your lives. It is also necessary for my husband and I to continue remembering as we go through the next few days.
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