Yes, I do know that I just posted an entry yesterday. I did not have a clear vision of what I was going to write, but since it was Saturday, I forced myself to do it. Guess what? Today really is Saturday! I also remember what I wanted to write about. So you get a bonus entry this week. Thank you FTD - the Great Confuser!
Being a caregiver for someone with FTD is a constant challenge and the demands are often changing. Being someone with FTD is a constant challenge and the demands are often changing. Yep, same for both. I have been both and have often said that I do not know which is more of a burden. They seem pretty equal to me. I do have some suggestions.
If the person with FTD repeatedly keeps doing something incorrectly, lecturing is probably not going to help. This morning, I went out onto the deck. If the deadbolt at the bottom does not spring up the way it should, it drags. It makes a racket and gouges into the door frame. I know that. If I remember right, I was the one who first realized it was happening. Still, my husband insisted on demonstrating it for me so that I "would know." I responded, in irritation, that I know that. He continued the discussion by saying something like, "Then why didn't you do it right?"
Where did he go wrong? When I opened the door, I kind of heard the grinding noise, but my brain is not capable of immediately linking that to the deadbolt dragging. I was focused on going out to clean the window over my kitchen sink. That was all I was focused on. I can only focus on one thing at a time. His pointing it out to me only succeeded in upsetting both of us.
That is the way it is with FTD. I have repeated my mantra on here many times: "One Thing at a Time." That is the limit of my abilities. If you try to add in something else, it prevents my brain from making sense of either thing.
Another trigger point can be avoided as well. When you hear the one with FTD try to explain something to someone or watch them do something and you disagree with the way they are doing it, stop and think about it for a few seconds before acting. Surprisingly, it is entirely possible that they are right. Often times, it may not be the way you would do it or they used to do it, pre-FTD, but it may be a way for them to successfully accomplish the same thing now. The same is true for what they are saying. It may take longer to get the point across, but if you let it go, it might work. It may also not, but it is better to wait a bit and see if they eventually get their point across.
The perils of butting in during these instances are many. First of all, you will be breaking their train of thought so that there is no hope of them finishing what they were trying to say or do. This will lead to total frustration on their part and they, most likely, will lash out at you. That frustration and anger can last the entire day or longer and make absolutely everything more of a challenge for both the one with the FTD and the caregiver.
If it was me, what I would prefer is that my caregiver gently touch me to get my attention. When my focus shifts to them, that is when they can steer me into a different direction. That can be by reminding me of a fact that I am forgetting something, whether it be in a conversation or an attempt to do something. Do not take over. This only accomplishes making me angry and frustrated. It also leaves me with the impression that you think I cannot do it, which leads me to feel worthless. I can assure you, that is one of the worst feelings to someone who used to have a vibrant and worthwhile life.
One thing that I don't believe I have ever written about before is us being a back seat driver. Giving up the driving privilege is extremely difficult for many of us with FTD. If you think about it, we are giving up a huge chunk of our independence and even our sense of self-worth. Not being able to drive makes one totally reliant on others for everything... shopping, doctor visits, visiting friends, just everything. It can be even more difficult in areas of no bus service, no cab service, no Uber.
Think about when you ride with someone else. If you see a peril and you don't know if the driver sees it, what do you do? You probably try to point it out to them. It can also be difficult to not mention a better route if you think you could save time that way. It is that way for someone with FTD as well, only much more so. When you also, in many cases, add in distorted vision, double vision or no peripheral vision, it can cause confusion and panic for the one with FTD.
Among other vision issues, I have totally double vision. What this does, when in a vehicle, is that if a car is approaching in the other lane, I see two, side by side. This makes it appear that one of the two is in our lane. It causes me to be extremely on edge the entire time we are travelling anywhere. If you add in the driver missing a turn, getting close to the edge of the road or just any little variance, that being on edge quickly becomes full blown panic. I do understand how frustrating that can be to the driver and how it could actually cause an accident. I can understand that, consciously, but I cannot stop my reactions. I cannot reason with myself to calm down and trust the driver. It just won't work. Sometimes I think I should ride blindfolded.
One of the things that FTD steals from us is impulse control but, at least for me, it also gives a sense of being out of control at the same time. I can no more withhold my panic, comments and warnings in the car than I could withhold removing my hand from boiling water. Oh, wait, bad example because I have done that, but you get the idea. It is instinctual, it is not something we are deliberately doing.
I will take a moment to mention transportation for seniors. I believe every area must offer it in one form or another, at least in Pennsylvania. In my area, it is van transport. Something to know is that if you have a disability, you do not have to be over 60 or 65, nor must you provide proof of the disability. The cost is minimal. I can use our senior vans, but they make limited runs so I might have to wait an hour or so before and/or after a doctor's visit. It is an option and has been quite useful a few times for me even if it is not the most desirable choice.
The main point I am trying to get across is that we do not do things to deliberately make your life more difficult. We do not do them to pick a fight or demand attention. The way we act or react is instinctual in nature. We do not sit there and think it through and come up with ways that we might irritate you. We react. As I said above, we have no impulse control, we think it, we do it or we say it. We have no empathy. We do not have the ability to wonder how this is going to affect you or anyone else. We have no sympathy. We do not have the ability to see how it affected you and feel sorry for hurting you. We don't realize that we have hurt you.
Don't be afraid, when we do or say something you don't like, to CALMLY tell us how it made you feel. We still might not care but, then again, we might. It also might let you feel a little better as well by getting it out in the open. Try not to raise your voice and say things accusingly even if we are raising ours. This will just add to our frustration and anger. I know this is a tough thing sometimes to ask of a caregiver and that it will often be pretty darned tough to do. I am hoping, though, that you might just see some things through our eyes and be more forgiving of the way we may react to you.
No comments:
Post a Comment