Today, I need to address the caregivers. I often say that the only thing worse than having FTD, is having to care for one who has it. It is pretty much a thankless job. I often lament about how friends and family shy away from me because I have FTD and they avoid me as much as possible. I have said before, I do understand why they do that. It is difficult to see someone you love falling apart. But today, I was told that this happens to the caregivers as well. Now, that is ridiculous! Are they afraid the caregivers are now carriers and they will catch it? More likely, just as it is with those with FTD, the others are uncomfortable because they don't know what to expect or what to say. For crying out loud people, the caregivers need a break and may still be able to visit your home, go out for lunch, whatever. I say shame on those who can't bear a little bit of discomfort to help out a friend, or just to keep up the relationship. Interesting enough, after I blog about this subject, I usually get a couple calls from friends, I am assuming that it is from guilt. To them, I say "Don't bother." I can tell the difference if you are truly interested in me or not. Enough ranting on that subject!
Okay caregivers, I think that because you are so used to helping the person you are caring for, you can sometimes do too much. This often results in the FTD sufferer feeling like a child. Never talk to them like a child even though it might seem like you are caring for one. It is belittling and insulting, please believe me on this.
I would like to also caution you about is don't take total control. If the one for whom you are caring can still make some decisions, allow them that dignity. Do not make decisions that they are still capable of making on their own, even if you think you are protecting them. Now, in some cases, you do need to protect them. There is a woman I was acquainted with because she worked in a store I frequented. She started calling me often. Unfortunately, she is one of those emotional leeches... sucks out all your energy and leave you feeling depressed. It used to be that I could get her to hang up by starting to talk about myself. Even that doesn't work anymore, she just ignores it and keeps on talking about herself again. Main subject, "Woe is me!" I have to have my husband shield me from her. She still calls, even though we have both explained to her that I just can't talk on the phone that it stresses me too much. So now, I don't feel guilty not answering when we see her number on Caller ID. I struggle enough each day to keep from feeling depressed because of the FTD and its limitations, I sure don't need to talk to her!
On the other side of the coin, if someone asks you if your loved one would like to, or could, do something, don't immediately shield them and say no. Ask them if they would be up to it. If they say yes, you might want to warn the person asking that if it gets to be too much, please don't argue with them when they say they can't do it anymore. It's always good for the FTD sufferer to be able to step away from something that is stressing them. But, if you keep them away from anything that might stress them, you might be shielding them from something they would enjoy doing. If you let them decide, you might prevent them from feeling useless.
In the same vein, allow them to do some things around the house. Give them some laundry to fold... even if you have to redo it later. Or, if you are getting ready to do laundry, ask them to gather up the dirty towels. If you are cooking, if there is a simple task, (I would suggest skipping any that involves knives!) have them do it. Everyone likes to feel needed. I am lucky, I can still cook (and handle a knife). Cooking was always one of my favorite things to do. I have to break it down into tiny little steps now, and I have to rely on tasting things since I can't follow a recipe. My husband is usually just a few feet away, ready to offer help if it looks like I need it, but he will also back down if I tell him I've got it. He always checks to make sure the oven and stove are turned off and he reminds me to use a potholder, but he knows I need to keep cooking as long as I can.
Caretakers, after saying all this, I say. God bless you all. I have been on the other end, I know how frustrating and exhausting it can be. My biggest advice is that you need an occasional respite. Ask a friend or family member to sit in for you for a few hours so you can have some "me" time. Or, if you can afford it, many nursing homes offer respite weekends where they will take in your loved one for the weekend and allow you some time to yourself. You need it!
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