This past week, I saw a post on Facebook that listed ten phrases from the Bible that tell you how to be more loving. I have not bothered to look up the credited scripture verses, and I am rather down on God and my faith right now, so I won't bother listing the verses. I know it sounds harsh to say I am down on God and my faith, but it is my reality right now. It saddens even me, because I have had a strong faith for as long as I can remember. It is, however, hard to stay faithful when I don't feel He is being faithful to me right now. I keep trying to work through it. This is not what I started to talk about, but then again, I digress a lot, both here and in verbal speech. Perhaps my mind bounces around inside all the space left after the lobes of my brain continue to shrink? No, I don't think so, but it was really funny this morning when my sister and I were joking about it. Guess you had to be there...
Back on the subject of the ten phrases, it occurred to me that at least seven of them could be good guidelines for all who are caregivers for someone with this disease.
Listen Without Interrupting: Many people with FTD, including myself, struggle to get the words out sometimes. The words seem to be hanging out there, but my brain can't quite get a hold on them. I am sure it is exhausting sometimes to listen to me or others with the problem, but don't interrupt and try to insert the correct word for us. That just leads to more frustration, which leads to more of a problem thinking of the words we want and, sometimes, making us forget what we were trying to say at all. You would probably laugh hysterically if you watched me write these blogs. I will sometimes stare at the screen for minutes on end, trying to come up with a word I want.
Speak Without Accusing: Yeah, we do some really stupid things sometimes. We put things in places where they don't belong, make coffee without putting the coffee into the brewer, put on our shirts inside out and a whole lot more. To be correct here, when I say "we," I am saying "me." If you need to point out that we are doing something incorrectly or are asking where the milk is (I probably put it in the cabinet), ask calmly and keep it as light as you can. Often times, it comes off accusing to those of us hearing it. My immediate reaction is "Oh, no, I did something stupid again and he sounds angry that I did."
Answer Without Arguing: This goes hand-in-hand with the last one. If I ask you a question that, to you, seems really stupid, please know that I just cannot think of the answer right now. Take a breath if you need to before answering. I feel stupid enough having to ask it in the first place.
Give Without Sparing: Unfortunately, this is a constant for you caregivers. You are giving of yourselves and sacrificing so much of your own lives to care for us. I realize that and I am sure most others with FTD realize it as well and feel horribly guilty to be so dependent on you at all times. This disease is no fun for either of us. It also might be why we lash out at you sometimes.
Enjoy Without Complaint: The things we FTD'ers enjoy most may seem very boring or senseless to you. I find enjoyment from playing simple computer games that are geared for children. I figure it is exercising my brain somewhat as well. I have heard of others who like to do very simple jigsaw puzzles or do simple crafts (with the caregivers doing most of the work). Try to find some enjoyment in that yourselves. Say I want to go for a walk, enjoy it while it lasts and don't complain if I can only handle walking for one block. Doing all these things are very difficult for us and take a lot of energy. I couldn't walk a straight line if my life depended on it, but don't complain that I am walking like I am drunk. Just offer me your arm if I need to lean on it.
Forgive Without Punishing: This one really needs no explanation. We go back to some of the really stupid things we do, if it has caused some damage, like the milk that I put in the cabinet has soured, take a breath and forgive. This is a big one in the later stages of FTD when the bathroom accidents start happening. No one that I know of enjoys cleaning those up, but remember it isn't being done purposely or out of anger or boredom. It just happens.
Promise Without Forgetting: Most likely, your life as a caregiver, is a frantic mess. If you are working at a job, raising the children, helping out a parent, and still having to be the caretaker, I cannot imagine how you juggle it all. All of them are a full time job unto themselves. But, if you have made a promise to your loved one, try your best to remember to follow through. Looking forward to it just might be what got your loved one through another frustrating day. If you promised to bring home some cookies, they might have spent the entire day looking forward to one of those cookies. We do crave out sweets, it's part of the disease.
I will add one of my own here. Forgive Yourself For Not Being Perfect: All these suggestions I have made are not cast in stone. As I said a few paragraphs ago, being a caregiver is a difficult and thankless job. You just cannot do it all no matter how much you try. If you end up yelling at your loved one, forget something you promised or don't have time to sit and do an activity with them, it's okay. Tell them, sincerely, that you are sorry you didn't, or couldn't, do it... and ask for their forgiveness. Sitting for a minute, holding their hand, or giving them a simple hug, just might make it all okay again.
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