When to Help

Life can be a conundrum. How is that for a ten cent word coming from someone with FTD?

A question kept arising this past week. When does a caregiver step in and help, offer to help or just step aside and let someone with FTD do it alone? It seems that sometimes, at least in my life, that a caregiver walks a pretty narrow line between any one of the three. This is not limited to just my husband who lives with me. It is also true for my daughter, friends and other family members.

This isn't a cut and dry issue. People are all different, react differently and behave differently. What guidelines help with one person with FTD may not work for another. Like we often say "If you have seen one case of FTD, you have seen one case of FTD." If someone has been confrontational all their lives, odds are that they are going to be confrontational in their life with FTD. If they like to do things alone, they probably will still want to do it themselves. You get the idea, I'm sure.

The person with FTD most likely wants to feel that their life is still worth living. Because of that, the caregiver should not take over everything or do things because it is easier than to let the one with FTD try. I want to  keep cooking as long as I possibly can. I usually enjoy doing it but even that can overwhelm me at times. On the other hand, cleaning house is very low on my list of things to do that require use of my dwindling energy.

So, when does the caregiver step in and when do they back off? Like I said, it is tempting for the caregiver to take over just because it will done quicker and probably better. Some times it is pretty obvious that I have to do it myself. If I am agitated because a couple shrubs are overgrown, I will most likely get to the point where I grab the clippers and go outside to trim them. We limit my access to only the small handheld clippers that would only allow me to chop of the end of a finger, not the ones that would cut of my whole hand. In this circumstance, with these limitations built in, it is best for my husband to back off and allow me to do it. He does make sure to tell me that when I am done, he will take the clippings into the woods to dump them so that I don't try that. He also keeps an eye on me and if I am looking tired, legs shaking, stumbling or falling, he immediately comes and forces me to stop. If he doesn't make me stop completely, he at least makes me stop for a few minutes and drink some water. I no longer have the ability to know when I need to stop. I can no longer make that decision for myself. I would keep going until I injured myself.

It is the same way with cooking. He tries to be in view of the stove when I am cooking, just in case. He lets me do it myself but reminds me often that if I need help, he is there.  He is also a great cleaner-upper and does not complain when I make a mess. Of course he does get to eat the results, so there is a reward for him to back off and let me do it. He is learning to observe and step in when he sees I am struggling.

How does he know? Most of the time, when I need the help, is when I am becoming greatly frustrated. There are obvious signs when it comes to working in the kitchen. I will often be turning in circles because I cannot remember where something is kept or if I have set it down somewhere out of place. In this case, it is pretty obvious that I am struggling. There are more subtle signs as well. When I get stressed or frustrated, my speech abilities, as well as my balancing and walking, may worsen. It is the same basic principle when I am doing anything.

Now comes the difficult decision. Does he step in and take over? Does he come over and offer to help? Does he just let me do it because odds are I will lash out at him and insist on doing it myself? Ahh, if only there was a protocol or handbook for such things. On top of that, what works one day may be the worst thing to do the next.

First of all, be observant. Look for worsening FTD symptoms or slamming doors or doing things like turning in circles or yelling. Am I liable to hurt myself? Am I using a knife, clippers or something that will hurt me. Do I have something on the stove that might burn? Am I destroying a bush? Start off with the least invasive option. In the kitchen, for instance, ask if I could use some help. If I refuse, but the problems worsen or continue for long, it might be time to come over and help whether I want it or not. If it gets worse, it would be time to force me to sit down and take a breather. That is risky, because I may lash out.

It is important to realize that when someone with FTD lashes out, it is most often due to frustration, not the anger that it seems to be. This is when I need to be reminded, just as I am always telling everyone, that it is "One Thing at a Time." Something like, "Lets slow down and do this one step at a time." Sometimes, it helps to just tell me to stop and then give me a hug along with an assurance that we can do this together. Other times, I will reject any touch at all.

To try to break it down and to have something resembling protocol, we do this one step at a time as well. First of all, approach the problem, pay attention to the words and actions that are happening. By the same measure, be careful to use words that are not threatening, demeaning or liable to come across as belittling the FTD'ers abilities. React in an appropriate manner. If I am not endangering myself, others or the environment around me, provide assistance but do not take over. If things escalate, that is when you take over.

Above all, remember that we are doing the best that we can. We are trying to maintain dignity and a sense of worth. Wait for a response before jumping into the next level of assistance. Try to remain as calm as possible and as reassuring as possible. By you remaining calm, there is a better chance that we will as well.

Remember that we are still the same inside. We may not walk as well, speak as well or even control our bowels as well, but we are still a person and not a disease. When caring for my mom, in the late stages, I actually looked into her eyes and asked her if she was still in there. I would love to say that she looked into my eyes and squeezed my hand. It didn't work that way, she didn't react at all. I then put my hand in her peripheral vision and clicked my fingers. She moved her eyes to the side and looked at my fingers, then looked back at me with a questioning look. I imagined her saying, "Are you nuts or something?" That was the mom I knew and she was still in there.