Some days there is just no coming up with a subject to blog about. This usually happens after several days of being frustrated with the limitations FTD brings into my life.
One frustration that comes up repeatedly is a vast difference between the caregiver view of FTD and the view of the actual person who has FTD. These two viewpoints are not always vastly different but other times it can be a huge chasm.
Part of the problem lies in limited places that someone with FTD can express their opinion or explain what is happening in their lives. It would be wonderful if there was an open forum where both sides could express their viewpoint on the same subjects. Don't get me wrong, there are support sites that are open to both caregivers and those with the disease. Unfortunately, in my experience, these sites are slanted in favor of the caregiver. It saddens me to say that. In an ideal world, the view of both sides should be the same.
During this past week, I noticed a post on two of the support groups open to both. It was titled "8 Warning Signs That You Are Emotionally and Mentally Exhausted." (The link to the entire article is http://runwonder.com/relationships/8-warning-signs-that-you-are-emotionally-and-mentally-exhausted.html if you want to read the entire length.
The 8 items were: you are easily irritated; your motivation levels are dropping; you are experiencing anxiety attacks more than usual; you have trouble sleeping; meaningless things upset you; you feel dizzy and nauseous; you feel like crying for no reason; and, you start to feel detached.
I found this information to be quite interesting because, even though it was posted and commented on by caregivers, I realized that it pertained to all of us... those of us with FTD as well as the caregivers. We are really not all that different. We are all extremely frustrated by this disease.Those of us with the disease are frustrated by not being able to comprehend or do the things we used to do almost without thinking, things that just came naturally.
The first thing that came into my mind was the television remote control. I sit and stare at that dreaded device for several minutes before I can figure out how to tell it to do what I need it to. I often end up throwing it down or even across the room. When I do something like that, my husband gets angry and frustrated because he sees it as me acting in anger. He has not seen me struggling with the remote, all he knows is that I threw a fit and threw something which frustrates him to no end. This is only one small example as our days are filled with them.
Those of us with FTD are faced with difficult decisions that were not even conscious decisions prior to our disease. What to wear, when to brush our teeth, what to eat are just a tiny few. Everything we do throughout the day needs to be a conscious thought and can turn into total frustration. What do we do then? Usually, lash out in anger just as I do with the remote. Some days, it does not take long at all for us to give up on trying to do things. The other reaction is to panic because I cannot get something accomplished. Panic can lead to more anger and frustration and these just feed on themselves.
I really can only speak for myself, but I run away from the problem. Fortunately, most often I can now recognize when I am getting out of control. My world starts spinning, my mind cannot stop and, lately, my entire world goes black. I am so stressed that I cannot focus enough to see or hear anything around me. This is when I know to retreat to a quiet and dark place. If I don't have this kind of place to go to, I am liable to scream at people or just wrap my arms around myself and retreat from the world and everyone around me.
At home, my quiet space is what used to be just my bedroom. I have converted it into an all purpose room of sorts. One corner is my office and one corner is my comfort spot and the rest is bedroom. If I am fortunate enough to be near my room when frustrations get out of control like this, that is where I go. If I am lucky, I can fall asleep, but most times I am so wound up that I will just curl up into a fetal position and rock myself and sleep is impossible. If someone attempts to come in and try to calm me, it makes everything worse. I don't want anything to do with anyone or anything.
My daughter and my sister know how to deal with me when I reach that point and just leave me alone long enough to calm down. My husband? Not so much. I cannot fault him for that because his Alzheimer's Disease makes it very difficult for him to understand. It is not unusual for him to keep trying to come into my room to "talk about" it. That is the opposite of what I need.
So, if you follow along with this tale of struggling with the remote control, you just might see why I insist that the list of eight things can totally apply to someone with FTD. Now, look at the list again and compare those warning signs to how a caregiver might react to the same situation. Those warning signs are spot on once again. So, how different are we anyway?
This situation really did happen in my house just last week. I was actually lucky. If we had been out somewhere, at the store, at someone else's home or anywhere but home, it could have been a huge event. There would have been even more anger, frustration and stress on both sides.
This is why I say that we have more in common than either side of the equation realizes. We need more conversation and understanding. In the support groups that have both sides represented, it is possible that a different person with FTD could explain to the caregiver what probably happened. It could work the other way as well, another caregiver could explain to someone with FTD why our caregiver reacted the way they did.
What it comes down to is that we are ALL in this together. In my opinion at least, we need more open communication between the two sides. I cannot tell you how many people with FTD have told me that they don't visit these joint support group sites anymore because it is just too painful to read what caregivers think of their "loved" one for whom they are caring.
There are conferences that are just for caregivers. I don't know of any that are just for those of us with FTD. That, of course, would be problematic since we often need a caregiver with us but the principal is the same. There are respite programs for the caregivers. Those with FTD get no respite from the disease.
Please understand that I do understand what the caregiver deals with. I have explained numerous times that I was a caregiver for my grandmother, mother and aunt before I showed my own signs of the disease. I am also the caregiver for my husband. Yes, it is difficult when we are both each other's caregiver, but we have been managing so far, with a lot of help from my family. So while I do not know the difficulties in every case of FTD, since no two are the same, I have a pretty darned good idea.
My point here is that I am not trying to pick on or criticize the caregivers. My intent with this blog is to point out that both sides are dealing with the same issues. One side is not any easier than the other.
As I said, we are all in this together. We need to be more understanding of each other. We need to communicate more openly with each other and recognize that neither one of us has an easy row to hoe. There are many weeds everywhere, throwing up obstacles all over the place, all the time. We just need to make sure one side doesn't destroy the other.
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