Today, I want to try to answer two questions I hear frequently. These are not new questions and are ones I have tried before to get the answers out there, but I still keep getting asked. So bear with me while I try again.
The first is one that my sister and brother-in-law are always asking, "Why didn't you call us, we would have done that for you?" In a different form, caregivers ask, "Why do they insist on doing themselves and then just make a mess of it?" A perfect example of this presented itself to me a few days ago.
After getting out of bed one rainy day, I popped a coffee pod in the Keurig to enjoy a hot cup when I got back from getting the newspaper and mail. It didn't work that way. When I stepped into the laundry room, I was met with a nearly audible "Squissshhh." We had flash floods overnight, again. Our trusty sump pump tried, but could not keep up with the water trying to invade the house, causing it to come up from the floor drains there, as well as in the garage.
It quickly became overwhelming, but I kept saying to myself, "One thing at a time!" It wasn't time to panic. The water was only out of the drains by about three feet. That's in radius, not depth! I started lifting things off the floor. I started with cardboard boxes and anything sitting in water, then continued on to everything else. That was good, logical thinking for someone with FTD, I must say. I then started mopping up. It was only about three hours of work, leaving me tired but pretty darned good about myself that I did it.
The exhaustion did not come from the physical exertion, it was more the strain on the brain. So, why did I do it all myself? I could have awakened my husband to help or called my sister, but I believe that would have made it worse. My brain was already strained from trying to attack the problem in a logical manner: get things to safety, find the mop, bucket, towels, rags and anything else that could sop up the water. I turned the dehumidifier on to Turbo mode, set up a couple fans. I then attacked getting the water out. I did it and was feeling pretty good that I had done it.
I could have called my sister and had them come over with his wet vac and to help move things. I knew they wouldn't mind being drug out of bed and driving here. The problem with that is that I would have to coordinate things. I would need to think of what I should do, what everyone else could do. My brain would not have been able to do that. Also, the laundry room is not a large space, maybe 12x20 feet. Adding that many people into the room would have me feeling trapped.
That is why I had to do it myself. Did I do it exactly right? Probably not. Throwing everything made out of fabric that I could put my hands on in to soak up the water and then dragging them outside to dry out was not the best decision. Perhaps someone else might have thought to put them in the washing machine that was sitting right there and put them through the spin cycle. Perhaps using a wet vac would have been more efficient. Yes, but! I would have been a basket case that would have caused a set back for at least a couple days.
By doing it myself, I avoided a breakdown and ended up feeling pretty darned proud of myself for getting it done. This is an extreme example, but the premise is the same for anything. Some times, allowing the person with FTD to do something themselves might cause additional work for the caregiver, but is much preferable over an argument about it, one that could get nasty and lead to hurt feelings on both sides.
I am not saying to let someone with FTD do everything themselves, but when it appears to be possible for them to do it, why not let them. When a caregiver, family member or friend says "I could have helped you, you should have called," let it go at that. Don't keep repeating it or arguing that they should have called or asked you to do it. When someone does that to me, what I hear is "You are not capable of doing it yourself." Don't you think it would be better to say something like "You could have called me for help, but it sure looks like you got it done."
In other situations, if you realize that the FTD'er wants to do something on their own, as long as it doesn't present a serious danger, why not let them try? "Okay, go ahead but if you run into trouble, I'm right here to help." sounds much better than "No, you can't do that, you will make a mess of it." One hint, though. Don't let someone like me use the superglue. I spilled some on the counter and thought I could wipe it up with my hand. Enough said about that!
I give my sister and brother-in-law credit. They stayed away the day of the flood, but the next day, "impulsively" stopped by to bring me some tomatoes and peaches. They never added "and to check on things."
On to the second question. "Why do you let him/her just sit there with the tv on, not doing anything?" Another one is, "Why do you let her/him sit there and take naps all day." There are a lot of ways of asking a similar version of the same thing, as you can imagine.
If you will allow me to wear my caregiver hat for a while, I will try to explain it. My husband, who has Alzheimer's, always loved sports. I used to say he would watch turtle races if they were on tv. I actually saw him watching lawnmower racing once. He still insists he loves sports and is quite happy if I let him sit in his recliner watching them. He doesn't always understand what is going on and gets confused, but he seems to still enjoy watching. Yes, he nods off quite often, but he needs the rest. He still sleeps at night. He is not interested in anything else, but, to me, so what? To me, it is all about quality of life. He is happy, that's my biggest goal, to keep him that way.
Now, back to wearing the hat of someone with FTD. We need a lot of sleep. As I often mention, our brains seem to need more sleep than our bodies do, and our bodies need a lot! We also tend to know what we can do on any particular day. I can get out of bed in the morning and tell you if I can do things that day or if I just need to sit around doing nothing. Days when I feel like I can't do anything are usually days following a day when I did too much. Too much can be going out shopping, entertaining visitors, anything that requires my brain to do a lot of work. We have to learn to listen to our bodies and brains so that we can learn when to stop and do nothing. Pushing ourselves too far can cause a worsening of symptoms. Fortunately, most times we bounce back after a couple restful days.
It really helps if caregivers understand this so that they can schedule a day or two of downtime following a day of doing more than usual. If that isn't possible, it helps if they at least understand that the next day will likely bring out the cranky, grumpy and disagreeable FTD'er. Yes, I do realize how difficult this can be in real life. I can't tell you how many days of trying to make it through a day with FTD after being exhausted taking care of my husband.
One of the best parts of my day is in the morning, taking an hour for myself before my husband gets out of bed. I drink a hot cup of coffee, read the newspaper and enjoy the peace and quiet that someone with FTD needs. As long as I don't find water in the basement along the way.,,
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