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.
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