I promise that this is going to be my last blog entry about the loss of my uncle. At least I hope it is. Waiting two entire weeks between the day he passed until the funeral service was very difficult for me. Because, for the past year, I had been calling my aunt and uncle once or twice a week if they did not call me, two weeks of going to pick up the phone to call him triggered my grief over and over again. I did, however, talk to my aunt at least once a day throughout these two weeks. If I didn't call her, she called me. We did not talk for long because she didn't have strength for a long call. I believed I mentioned it in last week's blog entry, but she has cancer that has spread into her brain and is in hospice. She is moving into a care facility tomorrow, which I guess is a good thing. I wish a way could have been found to keep her at home like she wanted, but she is going into the move with a positive attitude.
As my aunt's cancer spread further into her brain, her symptoms became nearly identical to the ones I am dealing with as my FTD advances. I was often able to "translate" what she was growing through to my uncle and explain why she was wanting or not wanting certain things. I had also been able to come up with a few ways for them to cope as her disease progressed. Two of the biggies I had explained to him were apathy the loss of empathy. My uncle's passing made these clear to everyone. At least 15 or 20 people came up to comment on how she did not seem upset, that it was just a thing that happened.
When people would ask her how she was doing, she would respond "I feel like I want to cry, but I can't." Many of those who mentioned it to me were chalking it up to "maybe it hasn't sunk in yet." I explained dozens of times throughout the day that, yes, she does understand what happened and, yes, she is grieving in the only way she can. She misses him terribly and is lost without him by her side. It is simply that her emotions have been blunted by the cancer invading her brain to the point that the normal signs of grieving are not possible for her to feel or show.
Most people understood it when I explained it to them which was a relief. I am so thankful that they did mention it to me rather than to anyone else in town. (They live in a tiny, tiny town in an area of the state not heavily populated.) Hopefully, now, if anyone does mention that she seemed like she didn't care, others can explain it to them.
This issue has come up many times with others with FTD while they were dealing with funerals. Some have even resorted to wearing sunglasses so that people could not tell they were totally dry-eyed. I am saddened by all these stories. Rather than the families and friends learned about FTD they, instead, pass a judgement.
Just like most of the people I know with FTD are, this amazing woman was a trooper. Visitation was limited to just one hour and the priest did an abbreviated service knowing that it was all she could handle. She was accompanied by a hospice nurse, a volunteer and her sister. They set her up in a nice and comfortable chair. She was tucked up in one of the quilts she had made and the nurse was wise enough to put a medical face mask on her so that she did not become infected with anyone carrying flu or cold germs. She was also able to attend the luncheon for a short while as well.
In addition to this experience being an excellent example of apathy and loss of empathy, it was a demonstration of other symptoms of FTD. One of the largest things FTD has brought to me is the aversion to any change whatsoever. It can be a change to my routine, the grocery store relocating items or even the change of seasons. I become greatly agitated, restless and, to be honest, extremely irritable. My FTD symptoms also worsen when dealing with any change. By the end of this day, I had survived the three hour trip to their home town, family squabbles, a crowd of people whom I had never met, the total feeling of being out of control and then topped off by the trip home.
I was lucky though. My daughter had driven eight hours from her home to ours, then the trip up and back to my uncle's hometown, then turned around today to drive back to her home. She also knew how to keep me calm. Most of the time at the funeral home, she kept me sitting on an out-of-the-way sofa and letting people come to me. I did get up and make the rounds a couple times, to make sure I visited with everyone, but again, she was right by my side. At the luncheon, she immediately found us seats in the corner where there would not be overwhelmed by people being all around me. She went to the buffet and brought everything to me so I didn't have to be stressed by too many people near me. How did I get so lucky to have a daughter who understands me and FTD so well? I don't know, but maybe, just maybe, I did something right along the way.
She proves that there are ways for family and caregivers to make things easier for those of us with FTD. To me, it is extremely important for them to learn all they possibly can about the disease and what symptoms it may bring with it. Then when these symptoms develop with their loved one, they are prepared and don't conclude that they are doing it purposely or spitefully. If they have read or heard about how other caregivers have dealt with the symptoms, there is a better possibility they can react appropriately and help the situation rather than worsening it. I do realize that this is not always as easy as it sounds but it can help.
For all the caregivers and family members, please consider joining a support group. Many areas have live support groups for caregivers. There are also many online groups available. Just as I rely on my support groups for those of us with FTD, support groups can be a lifeline for caregivers.
Sunday, February 25, 2018
Saturday, February 17, 2018
Honey vs. Vinegar
Quite often, when I sit down to write a blog entry, I will get a couple paragraphs into the subject I was intending to write about and then realize, "Nope, this isn't it." In fact, it probably happens more often than not. It's never that the original subject isn't worth writing about. It is just that I realize that there really is something else buried deep in my mind that is influencing my actions and emotions. This week is certainly one of those weeks. I was getting into the subject of how we can sometimes use our FTD to excuse things that perhaps we shouldn't. Then it hit me that perhaps sometimes there is an underlying thought process that causes me to do that.
This week, there were a couple incidents of people griping about something. I usually don't mind this since everyone is entitled to an opinion. It is when they start forcing their opinion onto others that I get really angry. Even then, I can usually brush it off after a short period of feeling the anger. To me, what it came down to in this instance was that we all have to accept that none of us can be perfect. Often, we are working our hardest to provide what we believe people might need but are missing some key things that others wish we would do differently. How are we to know what each other needs if we don't talk to each other. There is also the paranoia that comes with FTD and that does not help us to look at things objectively either.
There is a good reason why my great grandma always said that you can catch more flies with honey than you get with vinegar. People tend to react to things in the same manner they are presented. If you want someone to cooperate and address an issue you have, it is usually more successful to present it in a non-confrontational manner. If you give a few tastes of honey first, the vinegar of your complaint or request will usually be accepted much more easily.
There are times when you are reacting to something and you don't realize the underlying reason as to why that particular reaction is being triggered. I don't think very many members of my family read my blog, so I feel safe in giving more details than I probably should.
This came into play in my own life this week. When my father passed away 25+ years ago, his baby brother, his wife and I grew extremely close and that just grew as the years went by. Last weekend, my uncle passed away.
His death was not expected at all. I was in shock until I realized that he had become the full time caregiver for my aunt who had been fighting cancer for a few years. This cancer had spread to her brain and she and I had grown even closer as her symptoms and my FTD symptoms were quite similar. I came to realize that his death is a perfect example of "Who is caring for the caregiver?" The strain was just too much for his body to absorb any longer.
My aunt decided that perhaps now was the time for her to agree to go to the local nursing home. The hospice and home nursing personnel had all said that she could no longer stay at home alone. Her goal was now to clean out their house. They had lived in the same house for around 40 years or more and he had the same mentality as most of the men in our family, "Keep it, it might come in handy someday." They had accumulated a lot of family heirlooms along the way as well. I did think of one family heirloom that I wanted and she promised to try to find it. Still, I have been obsessing over all those things and feeling a tremendous loss that they might be leaving our family.
We used to talk on the phone every couple days, but now we are talking a couple times a day. Of course, with my FTD, I cannot get into the car and drive up there to stay with her, help with the house and help care for her until she gets to the nursing home next week.
I finally realized that it is not all the stuff that I was wanting to have. I was trying to get back the connection that he and I had and to hang on to the one I have with her. With her moving to a nursing home, I am having to accept that I won't have her in my life much longer either. I was even taking my obsession with their things a step further. I was wanting these heirlooms so that my daughter can remember her aunt and uncle, her grandmother and even me.
I know she is not really going to want all the stuff from their house. She has some things that my aunt had already passed on to her and those are the treasures that will mean more to her than anything still remaining in the house.
In addition to realizing that missing him is why I was coveting all his things, I realized that not being able to go up there and help her was influencing more than I realized.
For once in my FTD life, I actually did something right. Instead of going off the deep end about a stranger helping her clean out their house and worrying myself until I was sick, I called my cousin. She talked me down off the ledge. She also called their house and spoke to the woman who was now staying there with my aunt. It turns out my aunt had not able to explain to me the relationship between the two of them. It is actually a good friend of hers whom she has mentioned to me many, many times. There is no one trying to put a wedge into my relationship with my aunt and I can still cling to her even though my uncle is gone.
I was very proud of myself, instead of asking my aunt to keep everything or demanding to talk to and vet this woman, I remembered my paranoia. I called my cousin, the person whom I knew would be best able to calm me. To tie it back to the beginning of this blog, I was able to hang on to the honey and skip the vinegar. I would not have ever been able to forgive myself if I had spoken to my aunt, or her friend, in a confrontational manner about mere things. It is the love that I will cling to, not "stuff."
This week, there were a couple incidents of people griping about something. I usually don't mind this since everyone is entitled to an opinion. It is when they start forcing their opinion onto others that I get really angry. Even then, I can usually brush it off after a short period of feeling the anger. To me, what it came down to in this instance was that we all have to accept that none of us can be perfect. Often, we are working our hardest to provide what we believe people might need but are missing some key things that others wish we would do differently. How are we to know what each other needs if we don't talk to each other. There is also the paranoia that comes with FTD and that does not help us to look at things objectively either.
There is a good reason why my great grandma always said that you can catch more flies with honey than you get with vinegar. People tend to react to things in the same manner they are presented. If you want someone to cooperate and address an issue you have, it is usually more successful to present it in a non-confrontational manner. If you give a few tastes of honey first, the vinegar of your complaint or request will usually be accepted much more easily.
There are times when you are reacting to something and you don't realize the underlying reason as to why that particular reaction is being triggered. I don't think very many members of my family read my blog, so I feel safe in giving more details than I probably should.
This came into play in my own life this week. When my father passed away 25+ years ago, his baby brother, his wife and I grew extremely close and that just grew as the years went by. Last weekend, my uncle passed away.
His death was not expected at all. I was in shock until I realized that he had become the full time caregiver for my aunt who had been fighting cancer for a few years. This cancer had spread to her brain and she and I had grown even closer as her symptoms and my FTD symptoms were quite similar. I came to realize that his death is a perfect example of "Who is caring for the caregiver?" The strain was just too much for his body to absorb any longer.
My aunt decided that perhaps now was the time for her to agree to go to the local nursing home. The hospice and home nursing personnel had all said that she could no longer stay at home alone. Her goal was now to clean out their house. They had lived in the same house for around 40 years or more and he had the same mentality as most of the men in our family, "Keep it, it might come in handy someday." They had accumulated a lot of family heirlooms along the way as well. I did think of one family heirloom that I wanted and she promised to try to find it. Still, I have been obsessing over all those things and feeling a tremendous loss that they might be leaving our family.
We used to talk on the phone every couple days, but now we are talking a couple times a day. Of course, with my FTD, I cannot get into the car and drive up there to stay with her, help with the house and help care for her until she gets to the nursing home next week.
I finally realized that it is not all the stuff that I was wanting to have. I was trying to get back the connection that he and I had and to hang on to the one I have with her. With her moving to a nursing home, I am having to accept that I won't have her in my life much longer either. I was even taking my obsession with their things a step further. I was wanting these heirlooms so that my daughter can remember her aunt and uncle, her grandmother and even me.
I know she is not really going to want all the stuff from their house. She has some things that my aunt had already passed on to her and those are the treasures that will mean more to her than anything still remaining in the house.
In addition to realizing that missing him is why I was coveting all his things, I realized that not being able to go up there and help her was influencing more than I realized.
For once in my FTD life, I actually did something right. Instead of going off the deep end about a stranger helping her clean out their house and worrying myself until I was sick, I called my cousin. She talked me down off the ledge. She also called their house and spoke to the woman who was now staying there with my aunt. It turns out my aunt had not able to explain to me the relationship between the two of them. It is actually a good friend of hers whom she has mentioned to me many, many times. There is no one trying to put a wedge into my relationship with my aunt and I can still cling to her even though my uncle is gone.
I was very proud of myself, instead of asking my aunt to keep everything or demanding to talk to and vet this woman, I remembered my paranoia. I called my cousin, the person whom I knew would be best able to calm me. To tie it back to the beginning of this blog, I was able to hang on to the honey and skip the vinegar. I would not have ever been able to forgive myself if I had spoken to my aunt, or her friend, in a confrontational manner about mere things. It is the love that I will cling to, not "stuff."
Saturday, February 10, 2018
Needing to Care for the Caregiver
What do you do when your caregiver needs you to be a caregiver? It gives a whole new meaning to the term "care partner." When I first found myself in this position, I thought I was the only one. Wow, was I wrong! I have learned that many with FTD are also the primary caregiver for a loved one with a different disease. As you can imagine, this is not easy at all.
I usually write about living with FTD and I guess this still is about that, but let me go back to the beginning. When my symptoms started, my husband was right there to help out and support me. When I could no longer drive, he drove me to work in the morning and returned in the evening for the return trip and never complained about it. He already took care of most financial chores, but he took over all of them with no complaint. He started keeping track of all my prescriptions and filled my daily pillboxes for me so that I did not make mistakes. When I was fired from my job, he was right there with all the moral support I needed. That was six years ago.
As those years went by, I was getting extremely frustrated with him because his support for me was not what it used to be. When things would go wrong, it was always my fault. He either did not recognize his mistakes or was trying to cover for them. I really started resenting him because I was having to do more and more of the day to day chores even though I did not have the energy or even the ability. When I complained enough about how I could not keep up with the housework, he would promise to pitch in and help. When that never happened, he finally agreed to hire someone to help out with that. This was one of the best things he could have done for me.
I started noticing him struggling with not only the tasks he had taken over for me, but others that he had always done. I brushed it aside and figured maybe that is what happened when you hit your mid seventies. (He is 10 years older than I am.) It was finally too much to brush off when he was unwilling to accompany me to a biopsy procedure last year. This would never have happened anytime prior to this during our married life of 40+ years. I discussed this with our doctor and she asked that I accompany him to his next appointment because she had been noticing things as well. You have probably guessed it, she diagnosed 'dementia, probable Alzheimer's'.
I am always trying to educate people about how FTD is different from Alzheimer's. I now realize that, for us, this is probably a very good thing. The differences make it possible for us to work through things. Many of the things that I struggled with, he can still do. The ones he struggled with were things that I am still capable of doing. I became the organizer, scheduling appointments and keeping our calendar straight so we got to where we needed to be when we needed to be there. Those were things that I could still do, as long as I paid strict attention to the details.
The most important thing that he has always done for me is supporting with the behavior part of Behavioral Variant FTD (bvFTD). He could, and still does, calm me down when I get stressed, over tired or start behaving inappropriately. He had learned to ignore the fact that I swore like a sailor and would have frequent meltdowns.
He was uncomfortable with giving up financial responsibilities even though we had a couple instances of him forgetting to pay a bill or two. The money was there, he just forgot. We came up with a compromise and now I open the mail and make it clear to him when something just needs filed or when a bill needs to be paid. He also agreed to not hold the bills until close to their due date, but to pay them as soon as they arrive. I double check later to make sure they have been. With this method, he still is still doing the actual financial tasks but with more confidence. I am not confident that this will work for a long time, but it's good for now and he is giving up responsibility just a bit at a time. He still sets up our pill boxes for the week, but I check them for accuracy afterward. I do not know if he realizes I am doing these things or not, but it is working. I know that one of the worst things about learning to deal with FTD was the feeling of lost dignity. I want to prevent that from happening for him.
Now that I know, and he has finally admitted, that he also has dementia, things are working more smoothly than they were. Now, when he tries to say that I must have mixed things up or made a mistake and I know that I have not, I am better able to deal with it and not have a meltdown because of it. Oh, I do still have meltdowns. It is a wonder there are not holes in the walls and doors. It is a fairly common event for me to be banging my head on the wall or, fortunately, the much softer back of the sofa. I end up pounding the doors out of frustration. At least it is a slapping rather than punching. He is unbelievably calm during times like this and is able to calm me fairly quickly. Yes, I have given myself a lot of headaches and sore hands. Fortunately, these meltdowns are not more than a one or two a week. We have been able to deal with the problem without resorting to any of the medications that many with bvFTD need to take... so far, anyway. I hate taking any more meds than absolutely necessary.
We have elected to not start my husband on the Alzheimer's medications. Being aware that it does nothing to stop the progression of the disease and only helps delay some of the symptoms, we decided that it was not worth the side effects for him. Many of the side effects are things that he could not deal with.
We are coping with managing our two forms of dementia and learning how to deal with it on a day to day basis. Of course it isn't easy, since my FTD changes from day to day. Talking to others with FTD who are also caregivers, he and I are not anything special. It adds more frustration for all of us. As I have talked about many times, FTD steals the filter between brain and mouth, so we struggle with being able to speak and act appropriately. Being a caregiver is one of the most stressful jobs there is and it takes a huge amount of patience. Well, guess what, those of us FTD don't have that anymore. One person who is in my position goes for a lot of walks instead of melting down like I do. Going for walks is not an option for me, but once the weather improves, I will at least be able to go outside. Sitting on the deck in my rocking chair and soaking up some vitamin D is soothing to me. I have also gotten quite good at pacing around the deck. I guess it's a good thing that we have a sizable deck and sturdy enough that my pacing has not worn any paths yet.
Another huge obstacle is the ever present lack of empathy. It is difficult to be sympathetic toward the other person's difficulties coping with their disease when you just don't care. I struggle to remember that his form of dementia is just as frustrating to him as mine is to me. I still don't care very much, but at least I am able to recognize that it is.
We each have a place of our own. I moved to a separate bedroom several years ago so that my sleep disruptions did not keep him awake. I also have my little "office corner" in that room so it is a place where I can retreat. He also has his "man cave" downstairs with his desk and all his "stuff", a comfortable place to sit and a TV to watch. When the day comes that I can no longer read, I will probably have one in my room as well.
Our poor daughter calmly listens to me every evening when she calls. Then she reminds me to breathe and we are usually able to laugh. Some days I feel guilty dumping my problems on her, but she, being the best daughter in the world anyway, insists it is her way of helping. See? Best daughter in the world!
I usually write about living with FTD and I guess this still is about that, but let me go back to the beginning. When my symptoms started, my husband was right there to help out and support me. When I could no longer drive, he drove me to work in the morning and returned in the evening for the return trip and never complained about it. He already took care of most financial chores, but he took over all of them with no complaint. He started keeping track of all my prescriptions and filled my daily pillboxes for me so that I did not make mistakes. When I was fired from my job, he was right there with all the moral support I needed. That was six years ago.
As those years went by, I was getting extremely frustrated with him because his support for me was not what it used to be. When things would go wrong, it was always my fault. He either did not recognize his mistakes or was trying to cover for them. I really started resenting him because I was having to do more and more of the day to day chores even though I did not have the energy or even the ability. When I complained enough about how I could not keep up with the housework, he would promise to pitch in and help. When that never happened, he finally agreed to hire someone to help out with that. This was one of the best things he could have done for me.
I started noticing him struggling with not only the tasks he had taken over for me, but others that he had always done. I brushed it aside and figured maybe that is what happened when you hit your mid seventies. (He is 10 years older than I am.) It was finally too much to brush off when he was unwilling to accompany me to a biopsy procedure last year. This would never have happened anytime prior to this during our married life of 40+ years. I discussed this with our doctor and she asked that I accompany him to his next appointment because she had been noticing things as well. You have probably guessed it, she diagnosed 'dementia, probable Alzheimer's'.
I am always trying to educate people about how FTD is different from Alzheimer's. I now realize that, for us, this is probably a very good thing. The differences make it possible for us to work through things. Many of the things that I struggled with, he can still do. The ones he struggled with were things that I am still capable of doing. I became the organizer, scheduling appointments and keeping our calendar straight so we got to where we needed to be when we needed to be there. Those were things that I could still do, as long as I paid strict attention to the details.
The most important thing that he has always done for me is supporting with the behavior part of Behavioral Variant FTD (bvFTD). He could, and still does, calm me down when I get stressed, over tired or start behaving inappropriately. He had learned to ignore the fact that I swore like a sailor and would have frequent meltdowns.
He was uncomfortable with giving up financial responsibilities even though we had a couple instances of him forgetting to pay a bill or two. The money was there, he just forgot. We came up with a compromise and now I open the mail and make it clear to him when something just needs filed or when a bill needs to be paid. He also agreed to not hold the bills until close to their due date, but to pay them as soon as they arrive. I double check later to make sure they have been. With this method, he still is still doing the actual financial tasks but with more confidence. I am not confident that this will work for a long time, but it's good for now and he is giving up responsibility just a bit at a time. He still sets up our pill boxes for the week, but I check them for accuracy afterward. I do not know if he realizes I am doing these things or not, but it is working. I know that one of the worst things about learning to deal with FTD was the feeling of lost dignity. I want to prevent that from happening for him.
Now that I know, and he has finally admitted, that he also has dementia, things are working more smoothly than they were. Now, when he tries to say that I must have mixed things up or made a mistake and I know that I have not, I am better able to deal with it and not have a meltdown because of it. Oh, I do still have meltdowns. It is a wonder there are not holes in the walls and doors. It is a fairly common event for me to be banging my head on the wall or, fortunately, the much softer back of the sofa. I end up pounding the doors out of frustration. At least it is a slapping rather than punching. He is unbelievably calm during times like this and is able to calm me fairly quickly. Yes, I have given myself a lot of headaches and sore hands. Fortunately, these meltdowns are not more than a one or two a week. We have been able to deal with the problem without resorting to any of the medications that many with bvFTD need to take... so far, anyway. I hate taking any more meds than absolutely necessary.
We have elected to not start my husband on the Alzheimer's medications. Being aware that it does nothing to stop the progression of the disease and only helps delay some of the symptoms, we decided that it was not worth the side effects for him. Many of the side effects are things that he could not deal with.
We are coping with managing our two forms of dementia and learning how to deal with it on a day to day basis. Of course it isn't easy, since my FTD changes from day to day. Talking to others with FTD who are also caregivers, he and I are not anything special. It adds more frustration for all of us. As I have talked about many times, FTD steals the filter between brain and mouth, so we struggle with being able to speak and act appropriately. Being a caregiver is one of the most stressful jobs there is and it takes a huge amount of patience. Well, guess what, those of us FTD don't have that anymore. One person who is in my position goes for a lot of walks instead of melting down like I do. Going for walks is not an option for me, but once the weather improves, I will at least be able to go outside. Sitting on the deck in my rocking chair and soaking up some vitamin D is soothing to me. I have also gotten quite good at pacing around the deck. I guess it's a good thing that we have a sizable deck and sturdy enough that my pacing has not worn any paths yet.
Another huge obstacle is the ever present lack of empathy. It is difficult to be sympathetic toward the other person's difficulties coping with their disease when you just don't care. I struggle to remember that his form of dementia is just as frustrating to him as mine is to me. I still don't care very much, but at least I am able to recognize that it is.
We each have a place of our own. I moved to a separate bedroom several years ago so that my sleep disruptions did not keep him awake. I also have my little "office corner" in that room so it is a place where I can retreat. He also has his "man cave" downstairs with his desk and all his "stuff", a comfortable place to sit and a TV to watch. When the day comes that I can no longer read, I will probably have one in my room as well.
Our poor daughter calmly listens to me every evening when she calls. Then she reminds me to breathe and we are usually able to laugh. Some days I feel guilty dumping my problems on her, but she, being the best daughter in the world anyway, insists it is her way of helping. See? Best daughter in the world!
Saturday, February 3, 2018
Letting Go of Guilt and the "I Shoulds"
It won't surprise you at all when I tell you that I visit my online support groups every day. It is what keeps me sane most days. Recently, several comments were fairly similar. They were either questioning why or lamenting that they can no longer do the things that they used to. The energy and/or desire is no longer there, but it seems to have been replaced by guilt.
I will admit that for quite a while, I also fell into this trap. I had no desire to do many things and no energy to do the ones I wanted to. I felt oh so guilty all the time. There were days when I would just sit on the couch and stare out the window for the entire day, then tell my husband I was too tired to cook dinner. Then I would feel guilty about that and it would spiral from there.
Guilt is self defeating, without a doubt. If you have no energy, it is a real thing. Add in the apathy that FTD brings, and you don't care if things get done anyway. Every day, I would tell myself to get up and do something, that if I did something I would feel better about myself. It would also get me moving. I still couldn't do it. I believed that I should do it. Some days I even wanted to do it. It didn't matter though, I still was not able to.
This inertia was not due to depression. but I did start feeling depressed that I was not doing the things I believed I should. My answer and my advice to all others with the disease is to avoid the "I shoulds". While I wish I could do even a fraction of the things I used to do, I have stopped telling myself what I should be doing. I no longer feel guilty if I want to sit and watch the birds or the squirrels all day or if I while away the day on the computer. Those things still stimulate my brain and that is what I think I need most.
There is a huge difference between "I should" and "I could."
Keep in mind that FTD steals our executive functioning skills. How does this come in to play? Executive functioning involves the ability to plan and strategize. For instance, with me a big "I should" was always cleaning the house. This should have been an easy task... boring, but easy. Without executive functioning, that became a single task. I kept telling myself to get up and clean the house. I was not capable of breaking that down into separate tasks. Prior to FTD, I would have told myself, "okay, today we dust," then the next day "today we clean the kitchen counters." Cleaning the house was too overwhelming to even attempt no matter how much I believed that I should.
How self-defeating the "I shoulds" are. The more I believed it, the guiltier I felt and the more overwhelmed I grew to be. So, I did nothing. I have mentioned many times that I see a psychologist, one who specializes in dementia. She actually understands FTD, unlike any other doctors I have come across in this area. She finally convinced me of what I was doing to myself. I needed to replace shoulds with coulds.
I was quite good at explaining FTD to others. I talked about it to anyone who would listen and I wrote about it for anyone who would read it. I talked about the inability to plan or accomplish complex tasks. I explained about the lack of energy, combined with the need for many more hours of sleep than ever before. I explained, but I had not fully accepted it my mind. After all, who wants to be that way? Often times, I unjustly would feel guilty for those things. It was so much easier to guilt myself into believing that I should still be doing everything, rather than accepting that I no longer could do everything.
The best thing she kept encouraging me to do was to hire someone to come in and clean my house. We have no pets and it's just my husband and me, so once a month has been often enough. I was lucky. We started out by hiring a cleaning service but then I found a lovely older lady who said she could do it. My insurance agent assured me that my homeowners would cover any injuries or even thefts. She does it for only $60. That is the best money I spend each month.
By removing this huge and overwhelming task from my "should" list, I was able to concentrate on the "coulds." I had not realized how much energy I was expending on feeling guilty. After I removed that burden, I could bake some cookies if it was a non-fuzzy brain day. I could cook more often, I could make that grocery list. I actually realized how I was defeating myself by not recognizing how complicated things truly are for the FTD brain. Now, if I want to sit on the couch watching the birds and squirrels all day, I no longer feel guilty. If I have a day when all I have energy I can come up with is to make grilled cheese sandwiches for dinner, I no longer feel guilty. If it needs to be a carry out day, it doesn't weigh on my mind.
I must say that my husband had never once complained about what I would make for dinner. He would not complain if I sat all day or played computer games all. Once I let go of the guilt, he saw the difference. While I still struggle to get him to understand that I can only do one thing at a time, e will now ask me if I am up to doing a needed task that day. Usually I am able, but sometimes it is just "one of those days." If I tell him it is a bad day, he will set it aside for another day. Sometimes, though, he tells me we must do it today but he offers to help me do it. I never accept his help, but that is a wholly different subject. It's a lifelong hang up of mine. He has learned that, when he can, he asks me to do something within a few days and will leave something sit out to remind me. Of course, sometimes, I need to ask him what it was supposed to remind me of!
Not everyone can spare the extra money to have someone clean the house or have anyone willing to to do it for them. In that case, I suggest sitting down and making a schedule. Write on the calendar, "clean kitchen floor," or "vacuum carpets." That way, you do that scheduled task and don't have to think about the next one. Remember, every task we do is really consists of many tasks. For instance, cleaning the kitchen floor is: move loose furniture from room, locate your bucket, remember which cleaning product is appropriate, read the label for how much to use, where is the mop and on and on. It is like that for nearly everything we do. What used to seem like a simple task probably isn't anymore. That is okay... one thing at a time. That mantra gets me through most anything. Well, except for assembling the so called "some assembly required" filing cabinet that I got for my birthday. That tale would take several pages to tell. It might make a good comedy show though.
I know I have focused on cleaning the house. That is because it was the biggie for me. It can also apply to anything you were able to do pre-FTD. It could be gardening, cooking, shopping or anything that makes you feel overwhelmed. Bottom line is letting go of the guilt. I found that, once I let go of the guilt I was putting on myself, I am more able to resist it when others try to put me on a guilt trip. I even have the ability to find the ability to say "no." Not often enough, but I am still working on it. Change all the "I shoulds" into two categories, "I can" or "I can't" and go from there. Don't feel guilty if you have a lot of "I can'ts." If you feel you have to defend yourself, when you say "I can't," add something "FTD won't let me."
Try, when you find yourself feeling guilty or thinking about what you should do, telling yourself (yes, I do talk to myself) "Just stop it, no guilt allowed!" Another biggie is to realize that it really is okay to say "no."
I recognize that many will disagree with my way of dealing with the issue. There are those who believe that FTD does not have to change what you can do. I believe that is decent advice as long as you aren't doing it because you feel guilty. I don't think anyone would argue that feeling better about yourself can be healing. It does interest me that most, though not all, of the people I see or hear advising this are not people with FTD, they are caregivers.
I keep going back to the advice the neuro-psychiatrist gave on the day he gave me my diagnosis. He said that I don't have to set the world on fire, become a runner or push myself beyond my limit. He made me promise to walk the equivalent of one block every day and he would be happy. I am not sitting around doing nothing. I am doing everything I can and do try to do more. I do try to improve my diet by eliminating as many processed foods as possible. I just don't feel guilty if I can't do it or if some days I choose not to.
I will admit that for quite a while, I also fell into this trap. I had no desire to do many things and no energy to do the ones I wanted to. I felt oh so guilty all the time. There were days when I would just sit on the couch and stare out the window for the entire day, then tell my husband I was too tired to cook dinner. Then I would feel guilty about that and it would spiral from there.
Guilt is self defeating, without a doubt. If you have no energy, it is a real thing. Add in the apathy that FTD brings, and you don't care if things get done anyway. Every day, I would tell myself to get up and do something, that if I did something I would feel better about myself. It would also get me moving. I still couldn't do it. I believed that I should do it. Some days I even wanted to do it. It didn't matter though, I still was not able to.
This inertia was not due to depression. but I did start feeling depressed that I was not doing the things I believed I should. My answer and my advice to all others with the disease is to avoid the "I shoulds". While I wish I could do even a fraction of the things I used to do, I have stopped telling myself what I should be doing. I no longer feel guilty if I want to sit and watch the birds or the squirrels all day or if I while away the day on the computer. Those things still stimulate my brain and that is what I think I need most.
There is a huge difference between "I should" and "I could."
Keep in mind that FTD steals our executive functioning skills. How does this come in to play? Executive functioning involves the ability to plan and strategize. For instance, with me a big "I should" was always cleaning the house. This should have been an easy task... boring, but easy. Without executive functioning, that became a single task. I kept telling myself to get up and clean the house. I was not capable of breaking that down into separate tasks. Prior to FTD, I would have told myself, "okay, today we dust," then the next day "today we clean the kitchen counters." Cleaning the house was too overwhelming to even attempt no matter how much I believed that I should.
How self-defeating the "I shoulds" are. The more I believed it, the guiltier I felt and the more overwhelmed I grew to be. So, I did nothing. I have mentioned many times that I see a psychologist, one who specializes in dementia. She actually understands FTD, unlike any other doctors I have come across in this area. She finally convinced me of what I was doing to myself. I needed to replace shoulds with coulds.
I was quite good at explaining FTD to others. I talked about it to anyone who would listen and I wrote about it for anyone who would read it. I talked about the inability to plan or accomplish complex tasks. I explained about the lack of energy, combined with the need for many more hours of sleep than ever before. I explained, but I had not fully accepted it my mind. After all, who wants to be that way? Often times, I unjustly would feel guilty for those things. It was so much easier to guilt myself into believing that I should still be doing everything, rather than accepting that I no longer could do everything.
The best thing she kept encouraging me to do was to hire someone to come in and clean my house. We have no pets and it's just my husband and me, so once a month has been often enough. I was lucky. We started out by hiring a cleaning service but then I found a lovely older lady who said she could do it. My insurance agent assured me that my homeowners would cover any injuries or even thefts. She does it for only $60. That is the best money I spend each month.
By removing this huge and overwhelming task from my "should" list, I was able to concentrate on the "coulds." I had not realized how much energy I was expending on feeling guilty. After I removed that burden, I could bake some cookies if it was a non-fuzzy brain day. I could cook more often, I could make that grocery list. I actually realized how I was defeating myself by not recognizing how complicated things truly are for the FTD brain. Now, if I want to sit on the couch watching the birds and squirrels all day, I no longer feel guilty. If I have a day when all I have energy I can come up with is to make grilled cheese sandwiches for dinner, I no longer feel guilty. If it needs to be a carry out day, it doesn't weigh on my mind.
I must say that my husband had never once complained about what I would make for dinner. He would not complain if I sat all day or played computer games all. Once I let go of the guilt, he saw the difference. While I still struggle to get him to understand that I can only do one thing at a time, e will now ask me if I am up to doing a needed task that day. Usually I am able, but sometimes it is just "one of those days." If I tell him it is a bad day, he will set it aside for another day. Sometimes, though, he tells me we must do it today but he offers to help me do it. I never accept his help, but that is a wholly different subject. It's a lifelong hang up of mine. He has learned that, when he can, he asks me to do something within a few days and will leave something sit out to remind me. Of course, sometimes, I need to ask him what it was supposed to remind me of!
Not everyone can spare the extra money to have someone clean the house or have anyone willing to to do it for them. In that case, I suggest sitting down and making a schedule. Write on the calendar, "clean kitchen floor," or "vacuum carpets." That way, you do that scheduled task and don't have to think about the next one. Remember, every task we do is really consists of many tasks. For instance, cleaning the kitchen floor is: move loose furniture from room, locate your bucket, remember which cleaning product is appropriate, read the label for how much to use, where is the mop and on and on. It is like that for nearly everything we do. What used to seem like a simple task probably isn't anymore. That is okay... one thing at a time. That mantra gets me through most anything. Well, except for assembling the so called "some assembly required" filing cabinet that I got for my birthday. That tale would take several pages to tell. It might make a good comedy show though.
I know I have focused on cleaning the house. That is because it was the biggie for me. It can also apply to anything you were able to do pre-FTD. It could be gardening, cooking, shopping or anything that makes you feel overwhelmed. Bottom line is letting go of the guilt. I found that, once I let go of the guilt I was putting on myself, I am more able to resist it when others try to put me on a guilt trip. I even have the ability to find the ability to say "no." Not often enough, but I am still working on it. Change all the "I shoulds" into two categories, "I can" or "I can't" and go from there. Don't feel guilty if you have a lot of "I can'ts." If you feel you have to defend yourself, when you say "I can't," add something "FTD won't let me."
Try, when you find yourself feeling guilty or thinking about what you should do, telling yourself (yes, I do talk to myself) "Just stop it, no guilt allowed!" Another biggie is to realize that it really is okay to say "no."
I recognize that many will disagree with my way of dealing with the issue. There are those who believe that FTD does not have to change what you can do. I believe that is decent advice as long as you aren't doing it because you feel guilty. I don't think anyone would argue that feeling better about yourself can be healing. It does interest me that most, though not all, of the people I see or hear advising this are not people with FTD, they are caregivers.
I keep going back to the advice the neuro-psychiatrist gave on the day he gave me my diagnosis. He said that I don't have to set the world on fire, become a runner or push myself beyond my limit. He made me promise to walk the equivalent of one block every day and he would be happy. I am not sitting around doing nothing. I am doing everything I can and do try to do more. I do try to improve my diet by eliminating as many processed foods as possible. I just don't feel guilty if I can't do it or if some days I choose not to.
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