Sunday, May 24, 2020

There are no Absolutes!

Things have been interesting since I was able to once again start blogging after a couple months of being too busy and too exhausted. In addition to having the time and energy to blog, I have also been spending more time in the support groups. That has been heartwarming and informative, yet, sometimes, downright scary.

Many bloggers have been posting very strong and absolute opinions. I know I have been guilty of making absolute statements once in while, but I really do try not to.  As we all know, no two cases of FTD are the same. There are no absolutes. That is except for the absolute that FTD sucks all the way around.

When I see other bloggers and self-appointed "experts" asserting things like "No one with dementia should be on this medication." or "Your loved one obviously has xxx/diagnosis," I get frightened. We are not experts and there are perils in diagnosing when you don't have an M.D. or D.O. behind your name. I will admit I have caught myself coming downright close to that, but when I do, I back off and recommend that they discuss it with their or their loved one's doctor. Just because we have FTD or care for someone who does, it does not make us an expert. I try to use the word "possibly" or "could".

Medication that help one person with FTD may not help the next person. Answers to behavioral questions are the same. There are so many different ways for an FTD (or any dementia) patient to react to the same stimuli that, just as with medications, one way of handling a situation with one patient may worsen the situation for another. 

Posts by caregivers often anger me. I am pretty sure everyone knows it when that happens. I try to bite my tongue, but sometimes I just cannot. No, the FTD patient is probably not plotting to make your life miserable. First of all, the FTD mind is usually not able to put together a plan to do so. More often, they are desperate for love, signs of affection, understanding or comfort. Also, you must include how frightened they can feel and lonely in their battle. "Why is this happening to me?" "Why does no one understand or tell me what and why these things are happening to me." 

This is not to say that someone with FTD cannot try to gain these things when they are lacking. My mother, while in an assisted living facility that was near to my sister, would do things like hide her glasses. She could remember that the last time that happened, the staff called my sister and she came right over. To me, this was not being manipulative. It was just a case of her being lonely and actually able to come up with an excuse to get my sister to visit. She was not able to think through that if she was not there, my sister must be busy or not feeling well. That is too many layers of thought processes for her. She was lonely and came up with a way to get my sister to visit. The end! Of course it only worked once. She was not being selfish, not being mean, not being manipulative. She was lonely and bored.

I just have to share one of my favorite memories of my mom while she was in that assisted living facility. My husband and I had driven to Florida from Pennsylvania and were visiting with her as much as we could. After a few visits, my mom looked at my husband, put her hands on her hips and said "Just who are you and what do you want?" No, it wasn't funny that she was confused. It was that this was totally something she would have done and in the same manner in years past. My poor husband suffered the abuse of all of us asking him that until he died. Hey, you have to find humor where you can.  

Recently, I read a post that said "No one with dementia should ever take this drug!"  That is probably true of many drugs, such as the anesthesia medication Versed, but there are no absolutes. There are times that even Versed must be used despite the probable escalation of FTD symptoms. 

The problem in this particular incident is that it was a prescription medication that helps a huge number of dementia patients. Without it, the patient can hurt themselves and others from lack of sleep, too much restlessness, agitation and anger. Yes, it would be ideal if no one with dementia had those symptoms or if those symptoms did not create dangerous situations. Perhaps a particular medication is not the ideal for FTD/dementia, but this is something that needs to be discussed with the patient's doctor. It must be weighed between the side effects of the medication versus the risks presented by not taking it. It must also be remembered how many different types of dementia exist. A medication that is good or harmful with one type of dementia may be the opposite for someone with a different type.

Caregivers can fall into the same trap with absolute advice such as "You MUST not allow this" or "You must stop allowing them to eat this" or "You must take this step to prevent injury." Just because something has worked in their situation, does not mean it will work for all. 

A good example is one of my pet peeves... when caregivers talk about locking up food from the FTD'er. I have written about it many times. To me, that seems cruel and obvious that the caregiver does not fully understand the intense cravings many with FTD experience, especially for carbs and sugars. They do not realize that the person with FTD is not creating these cravings on their own. It is their brain. Brains need sugars to function. A brain that is not functioning properly causes the cravings. It seems that maybe it needs to be weighed as to whether the quality of life for the FTD'er is more important than gaining weight which will be lost later in the FTD process. Is it worth the fight? However, as I said, no absolute. If the one with FTD also has diabetes, the fight is definitely worth it. Each case is different. While the idea of locking up and depriving someone of food they are craving is, to me, abusive, there are times when not doing so is.

Yes, I do catch myself giving absolute advice. I am relieved when I realize it before I post. But, unfortunately, I have FTD and do slip up. I rely on others to tell me I am wrong or simply goofed up. I encourage everyone to question what I say or write. I do not become offended, at least after I realize I did say something inappropriate.

I also try to be tactful when I am taken aback by something said or written. My words and I are not always seen as such by the one I am saying it to, but I do hope everyone can realize that my suggestions and advice are always meant to help, not to offend.

I have the advantage (or is it disadvantage) of having been the caregiver for 3 family members who had the disease before me. There were more than three, but I was not the caregiver for the rest. Now that I have it, I am usually able to look at issues from both sides of the problem of caregiver vs. FTD'er. I have also researched dementia, Alzheimer's and FTD for 25 years while trying to understand and find ways to help my family members. 

Am I an expert? Absolutely not! I have no medical background other than working in a hospital data processing department, marrying a hospital executive and hanging around with a lot of doctors through the years. I don't count managing a chiropractic practice or working in finance at a respiratory therapy company. The only benefit from all that experience is that I have a good understanding of medical technology and terminology. I also understand that medical personnel and physicians are human beings. The benefit of that is that I am not afraid to ask questions, discuss or question anything when dealing with doctors. 

I wish I could have learned through osmosis from dealing with all these professionals, but we know it doesn't work that way. I am not afraid to research and question things but certainly do not do so at a level above that of any of us dealing with FTD. 

I say all this because when I slip up and talk in absolutes, I hope everyone tells me I made a mistake.  Also, to those who I question about the same thing, I hope they understand why I do. I am not questioning their knowledge, I am questioning how they share it.

4 comments:

Anonymous said...

Again I have to thank you so much for your insights. I was diagnosed a year ago. I AM on drugs that people say "do not take" for FTD because neurologist said will still help me keep some memory longer. My husband thinks it helps me remember things now at home at this point as well even though I don't know myself but if he says so I guess it is. He won't go to support sites but I do but it seems all I see is caregivers complaining about things mostly. It is more helpful to me to see people with FTD and how they are dealing with things and hopefully I can help me cope a long as I can hang on.

Thank you again so much for all you do. I wish you well and glad you are feeling better now.

Unknown said...

We have a private FTD Patient Support group with over 200 members who have all been dx'd with FTD. All you need is a firm FTD diagnosis. If you are interested, please send me a friend request and your email address to Sheryl Whitman on Facebook.

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