I don't know if anyone noticed that I did not write a blog entry last week. I hope at least one or two people missed me.
I had no energy to write last weekend. My husband's Alzheimer's Disease worsened significantly. He was more confused and was not walking much at all. We had to start him wearing pull-ups because he was unable to get himself to the bathroom. He was waking me every hour or two because he could not get comfortable in bed. I was having to try to lift him which was nearly impossible. He would become totally rigid and could not help at all. I no longer have the strength I used to, but I'm not sure I could have ever lifted him in that condition even before FTD. Add in the confusion of FTD, I could not even figure out which way to move him when he would say he wanted to be further up on his pillow. It never even occurred to me to simply move the pillow.
On Monday, his condition was serious enough, my sister and brother in law helped me take him to the hospital. That was an adventure in itself. Here was this man, drooping in a wheelchair, not being able to speak much and totally confused. Yet we waited three hours until he was seen. Then we waited five more hours until they moved him out of the emergency room. The hospital was low on rooms so they decided he could go to an observation room.
The problem of being in an observation room is that Medicare and other insurances consider observation an outpatient situation. That means that for the CAT scan and MRI of his brain will cost us $500 each as a copay. If he was in a regular patient room, both would have been covered under his hospital stay. I hope those are the only two surprises.
There are so many problems with not only medicine today, but with hospitals and insurance companies. The entire stay was extremely frustrating because an observation unit is not equipped for the needs his condition warranted. Of course the staff got just as frustrated as I did. I had to argue with doctors who actually knew less about dementia than I do.
I have still been unable to get a report on the brain scans. I had an appointment with our family doctor on Friday and she was livid that she had not received them either. In this day of electronic records, she should have had access to his entire hospital stay but did not.
The next problem cropped up on Wednesday when the hospital wanted to send him off to rehab. We happen to have a fantastic rehab hospital in our town and I had no qualms about sending him there, knowing he would get better care than he was receiving at the hospital. I should not have been surprised when the insurance company denied the transfer. (Just today I received my copy of the denial and their reasoning was that his condition did not warrant it.) The next recommendation by the hospital was to transfer him to a nursing home that offers rehab treatment. He ended up being sent there and is receiving one rehab session a day. If he had been in the rehab hospital, it would have been three sessions a day for a total of five hours.
Don't get me wrong, he is being treated very well in this nursing home and is making progress. My grievance is that this decision was dictated by some clerk sitting in an office at the insurance company who was looking at his medical record and made this decision. They did not discuss it with hospital personnel, much less a consultation with the family. This seems so wrong to me.
Let me get back to FTD now. My limitation from FTD contributed to him needing to go to the hospital in the first place. Then, sitting for that length of time in the ER waiting area was extremely difficult... televisions blaring, people talking, children crying. I was out of control. I finally knocked on the door to the triage area (He had been through there soon after we had arrived.) I explained to the triage nurse how long we had been there and that his condition was worsening as we sat there. I finally asked her (not very politely) if she wanted him to die in the waiting room or if we should take him home to die. Not nice of me, but he was seen within ten minutes. I should also add that throughout this entire period of waiting, the patient advocate kept coming to us and assuring us he was at the highest trauma level and would be seen as soon as possible.
Morale of that story is "Don't stress someone with FTD, you can never tell what they might do or say!"
By time they took him to a room in the ER, I was totally exhausted, could not speak at all without stuttering, had a horrid FTD headache and was crying out of frustration. It didn't get much better for the next two days. He was calling me every two to three hours throughout the entire night. The third day, I knew he was getting better when I begged him to please not call me that night and explained how I needed some sleep. I did not receive a call until 7:45 a.m. and it was the nurse, not him. I was so relieved that he had actually comprehended what I was begging for.
I felt extreme guilt about not spending the entirety of each day there at the hospital with him and for not wanting to answer his calls. I knew he was just as frightened as I was, but I just could not deal with things on the small amount of sleep I was getting. Anyone with FTD who is reading this will understand. We need more sleep so that our brains can rest. Our brains seem to need more than our bodies do.
I also feel guilty because I am very angry with him. Two years ago, when I was frequently falling down the stairs, I begged him to have a stair lift installed. He refused, thinking that $3600 was too much and that I just needed to be more careful. I'm sure you guessed it already, I am having one installed for him in a couple days, before he comes home. I also purchased a rolling walker for him and a few other items to make the house easier for him to live in. A rolling walker is another thing that he refused to purchase for me. The anger level of someone with FTD can be downright frightening so that compounds my guilty feelings.
I have written so many times about the importance of a support team as well as the frustrations involved in not having one. So many of us have experienced our friends and family members running away in droves. I swear they must think dementia is contagious. My support system consists of my sister and her husband. They have been phenomenally supportive. She has been my chauffeur and has shown the patience of a saint with both my husband and me. Her husband spent his entire day on Monday with us at the hospital and kept us supplied with snacks and drinks. Wouldn't you think that the hospital, if they are keeping you waiting for that many hours, would at least offer a bottle of water? He also came over to the house and did a couple tasks that were too overwhelming for me right now. Plus, he did not complain about how much time my sister was devoting to me. Best brother in law ever! Best sister as well!
Now, after I have you screaming that I need to take care of myself if I plan to be able to care for him at all, I am finally listening. I left the nursing home at 2:30 this afternoon, which is Saturday, and do not plan on returning until midday on Monday. He is in the dementia unit at the nursing home so he does not have a phone in his room. I plan on sleeping and sleeping and sleeping.
I also asked our family doctor if she would order home nursing visits after he gets home and she immediately said she definitely would. So, if the insurance company has any compassion at all, I will have at least some help.
When I was diagnosed with FTD, it never occurred to me just how much it would impact every single thing in my life, nor how much difficulty my life would have over and above dealing with my own dementia. FTD controls our lives, impacts everything in them and can make us miserable without even trying. I hate this damned disease. I don't like Alzheimer's Disease and better either.
Saturday, September 15, 2018
Sunday, September 2, 2018
Toxic People
Another person with FTD, one whom I now consider a friend, asked me if I had ever written a blog about "Toxic People". I looked back through the years of blog entries and did not find one where I specifically used this term. I have, however, written about a lot of people who do become toxic. Many of them I wrote about in a blog back in September of last year. It was titled "Deniers, Disbelievers and Ostriches." Certainly the people I was describing are what are now labeled as toxic people. (https://ftdnoflowers.blogspot.com/2017/09/deniers-disbelievers-and-ostriches.html)
Before I get into this subject, I must remind all the readers that I am not a doctor nor a therapist. I have taken just a few courses in psychology but not nearly enough. I have been blessed with a lot of common sense and powers of observation and that is what I use when I write about life with FTD. Of course I live with my own FTD as well and have been a caregiver for several family members, including my husband at the present time. I also am lucky that my FTD has not stolen my reading ability and I do a lot of that and always have. That said...
I have seen toxic people described as draining, non-supportive and difficult. Those of us with FTD need to be surrounded with as many people as possible who are supportive, understanding, patient and enjoyable to be around. As with most people, we have to learn who are positive people to be around and those who are not.
It is difficult to remove yourself from a person who is toxic to your well being. There are probably a lot of people in all of our lives who were tolerable before our disease but no longer are. This would include people we have know for a long time or have forced themselves into our lives to make themselves feel better. It takes courage and strength to weed these people from your life but your life can be much better without exposure to them.
I had a friend who jumped into my life with both feet when she learned I had FTD. She claimed she knew all about it and understood what I needed. I think that meant she must have read a couple paragraphs about it. She was one of those people who wanted to talk to me every day. Notice I said "talk to" because that is what it amounted to. I used to joke that if I wanted to get her off the phone, I only needed to say something about myself. She also believed she knew everything I should do and would keep badgering me about it. When we were around others, she would answer for me. It took me a long time to shut down this relationship. It came down to my not wanting to hurt her feelings to the detriment of my own. I can not begin to describe the extreme relief it was to have this narcissist out of my life when I finally made the break.
Another person I needed to remove from my life was one who was constantly telling me details about other people in her life. This included many private things that I am sure the other person did not want to be shared. I came to realize that she was more than likely doing the same with everything she knew about my private life.
So, how do you recognize toxic people? I have learned that if I don't look forward to seeing them or hearing from them, there is certainly something about them that is not a positive influence on my life. Another sign can be that you feel worse or totally exhausted after dealing with them than you did going in.
Toxic people are not limited to just friends and acquaintances, They can also be family. It seems there is always at least one person in the family who bulldozes over everyone else. They manage to manipulate situations to make others look bad in order to make themselves the hero or the injured party in the situation. They love to tell everyone else about what you "did to them" when it was all engineered by them. This is truly a person who is toxic to all around them.
One type of situation that immediately comes to mind involves grandparents. Of course it can be other relatives as well, but I see it often with grandparents. The biggest example of this is plain emotional blackmail. "If you want to see your grandchildren you must ..." It can be financial demands, babysitting or anything they want to force the grandparents to do.
When I see this type of emotional blackmail, I get furious. Children are not things to be used as a bargaining chip. Grandparents can be one of the best influences for children. They generally have more time and patience to give them, teaching them and nurturing them in love. I know that, personally, some of the best moments of my life were summers that I spent with my grandparents. I learned so much from them and I think they learned from me. I always knew I was loved even when I was away from them. This was during the time that the term "generation gap" came into play. There was no generation gap in my life. I actually won a competition with my response to the question "What do you think of the generation gap and how can it be fixed?" by explaining that with me as an example, there did not need to be a gap.
One person told me that their children would not allow the grandchildren see their grandparents because "Grandma is too sick for you to go there." Yes, FTD is a disease, but it is not the kind of sickness that was being suggested. I suspect that, in this case, the children had not bothered to learn anything about FTD and equate it with mental illness. I should explain that this grandmother is in earlier stages of FTD and the grandfather is also in the home in case any issues did arise.
Toxic people can also destroy relationships by controlling events. They can make plans with someone and then not show up no matter how much the other person was looking forward to the event. Another way is to have a gathering of family members or friends and not invite the one with FTD. Come on people, we always find out!
Within the last month, there were two weddings I was not invited to. One was a family member and one was a long-time friend. In this day of social media, it's pretty difficult to keep a wedding a secret. I kept waiting for an invitation to each of them, finally realizing it was not coming. The ironic part is that they were both out of town so that I would not have been able to attend anyway. I finally convinced myself to let it go and be happy that there were two wedding gifts I did not need to buy.
Many people with FTD have difficulty speaking. There are subgroups of FTD called PPA, Primary Progressive Aphasia. With this type, thinking of words, speaking words or coming up with the correct words can all become difficult or impossible. Too many people are just not comfortable when trying to communicate with anyone who does not speak well. Others assume that if you can't think of words or say them, that you must be stupid. This is ridiculous, rude and definitely toxic to those with PPA. How difficult is it to slow down, listen with patience and try to understand. You know I have to say it... "Those with FTD have dementia, they don't have stupid." That includes PPA.
You often hear the phrase "you learn who your friends are when...". Yep, you certainly do with FTD. Family members and people you thought were friends seem to disappear. I cannot figure it out. Are they afraid it is contagious? Are they afraid they won't know what to say" Are they afraid we will make demands of them? I doubt that I will ever figure it out. All most of us want is time with family and friends so that we can feel normal for just a little while.
Oh, and one other type of toxic people can be caregivers. Whether they expect too much of us, don't allow us to do things we are capable of doing, try to force us to do things we are not capable of, try to control every second of our day or talk down to us as though we are children, it hurts. The worst thing, in my opinion, that toxic caregivers can do is to talk about us negatively or complain about how difficult their task is when we are right there hearing what is being said. We need to be encouraged, not complained about. Care giving is a tough job, but so is having FTD.
Can those of us with FTD be toxic to others? Probably since we are not that different from everyone else. If we are, it should be remembered that we more than likely can not help being the way we are. We are still fighting the lack of impulse control, empathy and all the other dreadful symptoms of FTD. Most often, we truly cannot control what we are doing. Please treat us with kindness and understanding... Please!!!
Before I get into this subject, I must remind all the readers that I am not a doctor nor a therapist. I have taken just a few courses in psychology but not nearly enough. I have been blessed with a lot of common sense and powers of observation and that is what I use when I write about life with FTD. Of course I live with my own FTD as well and have been a caregiver for several family members, including my husband at the present time. I also am lucky that my FTD has not stolen my reading ability and I do a lot of that and always have. That said...
I have seen toxic people described as draining, non-supportive and difficult. Those of us with FTD need to be surrounded with as many people as possible who are supportive, understanding, patient and enjoyable to be around. As with most people, we have to learn who are positive people to be around and those who are not.
It is difficult to remove yourself from a person who is toxic to your well being. There are probably a lot of people in all of our lives who were tolerable before our disease but no longer are. This would include people we have know for a long time or have forced themselves into our lives to make themselves feel better. It takes courage and strength to weed these people from your life but your life can be much better without exposure to them.
I had a friend who jumped into my life with both feet when she learned I had FTD. She claimed she knew all about it and understood what I needed. I think that meant she must have read a couple paragraphs about it. She was one of those people who wanted to talk to me every day. Notice I said "talk to" because that is what it amounted to. I used to joke that if I wanted to get her off the phone, I only needed to say something about myself. She also believed she knew everything I should do and would keep badgering me about it. When we were around others, she would answer for me. It took me a long time to shut down this relationship. It came down to my not wanting to hurt her feelings to the detriment of my own. I can not begin to describe the extreme relief it was to have this narcissist out of my life when I finally made the break.
Another person I needed to remove from my life was one who was constantly telling me details about other people in her life. This included many private things that I am sure the other person did not want to be shared. I came to realize that she was more than likely doing the same with everything she knew about my private life.
So, how do you recognize toxic people? I have learned that if I don't look forward to seeing them or hearing from them, there is certainly something about them that is not a positive influence on my life. Another sign can be that you feel worse or totally exhausted after dealing with them than you did going in.
Toxic people are not limited to just friends and acquaintances, They can also be family. It seems there is always at least one person in the family who bulldozes over everyone else. They manage to manipulate situations to make others look bad in order to make themselves the hero or the injured party in the situation. They love to tell everyone else about what you "did to them" when it was all engineered by them. This is truly a person who is toxic to all around them.
One type of situation that immediately comes to mind involves grandparents. Of course it can be other relatives as well, but I see it often with grandparents. The biggest example of this is plain emotional blackmail. "If you want to see your grandchildren you must ..." It can be financial demands, babysitting or anything they want to force the grandparents to do.
When I see this type of emotional blackmail, I get furious. Children are not things to be used as a bargaining chip. Grandparents can be one of the best influences for children. They generally have more time and patience to give them, teaching them and nurturing them in love. I know that, personally, some of the best moments of my life were summers that I spent with my grandparents. I learned so much from them and I think they learned from me. I always knew I was loved even when I was away from them. This was during the time that the term "generation gap" came into play. There was no generation gap in my life. I actually won a competition with my response to the question "What do you think of the generation gap and how can it be fixed?" by explaining that with me as an example, there did not need to be a gap.
One person told me that their children would not allow the grandchildren see their grandparents because "Grandma is too sick for you to go there." Yes, FTD is a disease, but it is not the kind of sickness that was being suggested. I suspect that, in this case, the children had not bothered to learn anything about FTD and equate it with mental illness. I should explain that this grandmother is in earlier stages of FTD and the grandfather is also in the home in case any issues did arise.
Toxic people can also destroy relationships by controlling events. They can make plans with someone and then not show up no matter how much the other person was looking forward to the event. Another way is to have a gathering of family members or friends and not invite the one with FTD. Come on people, we always find out!
Within the last month, there were two weddings I was not invited to. One was a family member and one was a long-time friend. In this day of social media, it's pretty difficult to keep a wedding a secret. I kept waiting for an invitation to each of them, finally realizing it was not coming. The ironic part is that they were both out of town so that I would not have been able to attend anyway. I finally convinced myself to let it go and be happy that there were two wedding gifts I did not need to buy.
Many people with FTD have difficulty speaking. There are subgroups of FTD called PPA, Primary Progressive Aphasia. With this type, thinking of words, speaking words or coming up with the correct words can all become difficult or impossible. Too many people are just not comfortable when trying to communicate with anyone who does not speak well. Others assume that if you can't think of words or say them, that you must be stupid. This is ridiculous, rude and definitely toxic to those with PPA. How difficult is it to slow down, listen with patience and try to understand. You know I have to say it... "Those with FTD have dementia, they don't have stupid." That includes PPA.
You often hear the phrase "you learn who your friends are when...". Yep, you certainly do with FTD. Family members and people you thought were friends seem to disappear. I cannot figure it out. Are they afraid it is contagious? Are they afraid they won't know what to say" Are they afraid we will make demands of them? I doubt that I will ever figure it out. All most of us want is time with family and friends so that we can feel normal for just a little while.
Oh, and one other type of toxic people can be caregivers. Whether they expect too much of us, don't allow us to do things we are capable of doing, try to force us to do things we are not capable of, try to control every second of our day or talk down to us as though we are children, it hurts. The worst thing, in my opinion, that toxic caregivers can do is to talk about us negatively or complain about how difficult their task is when we are right there hearing what is being said. We need to be encouraged, not complained about. Care giving is a tough job, but so is having FTD.
Can those of us with FTD be toxic to others? Probably since we are not that different from everyone else. If we are, it should be remembered that we more than likely can not help being the way we are. We are still fighting the lack of impulse control, empathy and all the other dreadful symptoms of FTD. Most often, we truly cannot control what we are doing. Please treat us with kindness and understanding... Please!!!
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