How to stop dangerous and/or irrational behavior

[Phil's wife]

Sometimes my husband gets an idea in his head and will not take no for an answer. So far, I have been able to smooth talk him out of it or fold and take him where he wants to go. The problem with folding is several times now I have missed activities or commitments with our kids in order to cater to his whims.

I do give him ativan when he needs it but most of the time if there is something he wants to do the medication only delays the persistence.

Example - Tonight my son had baseball practice. I wanted to stay when I took him to watch. My husband was watching TV and said he wanted to stay home. I knew he wanted to go to Home Depot (just outside our neighborhood) to get something for a piece of yard equipment that he can't use. After I left my daughter who was getting ready to leave called me to say dad was leaving after she did to ride his wheelchair to Home Depot alone. I immediately headed home and picked him up and took him to Home Depot and then back to ball field, missing most of practice.

We rarely leave him home alone for obvious reasons. He was so enthralled with TV and had been so restful today I thought he would be okay for a little bit tonight.

How do I prevent his whims from changing everyone's schedule - and/or endangering himself? I am sure this will just get worst as the FTD progresses.

Stephanie

 

[Katie C]

I would do a number of things. First, check with his doctor (I'm hoping he has a neuro-psychiatrist?) to see if he needs something more consistent than apr ativan. Glen actually couldn't even take Ativan because it made him MORE agitated. We found that a combination of an anti-depressent and an anti-psychotic worked best.

We were told pretty early on that he needed 24/7 supervision. That turned out to be very true,and it sounds like you're arrived there. We made the house as "escape proof" as possible.. alarm on the door, knobs he couldn't work, etc. (Glen was still able to walk, and climbed over a baby gate three days before he died. Oy.) Think in terms of making your house safe for a toddler.

This is a hard one, but neccessary for your own health and sanity: learn to say NO. And mean it. Sometimes you can use the Alzheimer's trick of putting it off (ok, but I need to finish x before we go) and see if he just moves on to something else. Doesn't always work with FTD but worth a try.

I eventually found a dementia specific daycare center in our area. He went for about 5 hours 3 days a week... I thought I was going to "do" all these things... I frequently went home and napped! Glen actually enjoyed going, they were very understanding about his more inappropriate social behaviors, and gave me and Kevin a much needed break.

 

[Phil's wife]

Katie, thanks for your reply. I will be calling the doctor to find out about additional medication. On Saturday my son and I were doing the yardwork - edging with the big edger around the cement areas and weed eating equipment. It was the first time my son had used the edger and Phil did not like the results. (He has always been bull-headed about things like this - now it is amplified.) So Phil wanted to re-do the edging. Of course he can't get it started (pull-cord) and asked for help. We would not help him, I tried over and over to talk him out of doing it - he kept trying to start it. Finally he moved on for the day. Yesterday he began to talk about the edger again - and crying about not being allowed to operate it. I know he has all intentions today to again ask our son to start it for him to operate while I am gone taking my daughter to riding lessons. This is an example of when no doesn't work for long and causes more problems. Do we give in and just walk beside him to try to prevent an accident? He has weakness all over, hands are most progressed but his legs are so weak he is always in his wheelchair unless walking to the bathroom - 10 feet.

What results did the additional medication Glen was on do? I would consider Phil to be in early middle stages of FTD.

 

[Katie C]

I would say the medications made him calmer, less agitated. Did he seem doped up? Sometimes towards the end, but the doses were pretty high by then. And the alternative was tooth grinding, inability to stay put for ore than a minute or so, increased hallucinations (especially audio)... so it was by far the better path.

Something you said struck me as a perfect example when trying to describe the difference FTD makes. In a "typical" ALS patient, the inability to use the edger would be sad, frustrating, another sign that the disease was progressing. For the FTD patient, there is no concept that the disease has made it impossible to use the edger... that executive, cause/effect function is gone. In his mind, he CAN use the edger so you and your son must be doing something to prevent it. So he will continue to try. It's a very frustrating thing to live with... you want at times to yell "Just STOP!" But they don't. Which goes a long way to answering the question why do we lock things up?