dealing with the obsessive compulsive behaviors

[Phil's wife]

For lack of a better phrase - obsessive compulsiveness. Whenever Phil gets something in his mind he wants to do -- like right now it is 10:40pm - bedtime - and Phil has decided he needs to clean the white wall paint off the arms of his wheelchair. I have tried several times to talk him into doing it tomorrow but he isn't happy with that. He is in the bathroom right now pulling everything out of the cabinets looking for cleaner that isn't there - it is in the laundry room. I am tired and ready to go to sleep and right now just biting my tongue.

A couple of days ago he had it in his head that he needed a new laptop. One month ago I gave into the iphone and additional cell plan/company that is a total waste. He already has an ipad and another laptop he rarely uses. I took his debit card. He stomped on my foot, tried to scratch me and tried to hit me and just plain fight with me. He is so weak he could not hurt me. Then he went to find my mom who is here with us to tell her what I did. What a night that was.

I get so tired of feeling like I have to give in to most of his whims to keep peace or to calm him. No laptop yet...hoping to hold my ground on that one.

Stephanie

 

[Miss]

Terry doesn't have FTD. He does, however, have a new 56" Sony LCD 3D TV in the den, a new 46" Sony LCD TV in the bedroom, an iPhone, a new HP laptop, etc... I know exactly what you are going through in that department. Before Terry lost all strength, he used to try to kick me when he didn't get his way. Same thing - no strength to hurt me physically, but emotionally taxing. Now that Terry has lost his hands, arms, legs and voice I dno't have to worry about the credit card! The unrealistic demands are still a daily issue, though. I have learned to walk out of the room. You are in my thoughts sweet girl. As much as we miss you around here, I'm glad you are with family.

 

[sadiemae]

No FTD here either, but the stressing and worrying about things all the time. Les is the guy who always lived by the creed "If you want something done right, do it yourself" Unfortunately, he can no longer do things, and it is left up to me, who never does it right. I understand the frustration, he just doesn't realize I am doing the best I can! Also, he doesn't do much, so he thinks a lot, about EVERYTHING!

 

[Katie C]

Stephanie.. sorry I saw this so late. You really need to talk to his doc about some anti-anxiety medication. It will help with the ocd a LOT!

 

[Phil's wife]

So, after another incident -- I wasn't home and our 19 yr old son tried to keep him from leaving the house in his wheelchair. My husband tricked him from leaving the door and when my son came back he was headed down the ramp and to the driveway where his wheel went off the curb and he toppled over bumping his head for a large scrape. Hospice nurse came and added Haldol (sp?) 2 mg every 4 hours as needed but she recommended we use almost regularly to completely prevent incidents.

Hoping this helps a lot.

 

[Phil's wife]

So, after another incident -- I wasn't home and our 19 yr old son tried to keep him from leaving the house in his wheelchair. My husband tricked him from leaving the door and when my son came back he was headed down the ramp and to the driveway where his wheel went off the curb and he toppled over bumping his head for a large scrape. Hospice nurse came and added Haldol (sp?) 2 mg every 4 hours as needed but she recommended we use almost regularly to completely prevent incidents.

Hoping this helps a lot.

 

[Katie C]

Stephanie... really happy to hear that. Keep in close touch with your hospice nurse about how well it's working... Glen's psychiatrist had to increase the dose fairly frequently (he was actually taking Seroquel but for the same issues...) She also had him on a maintenance dose, but with the understanding that if we had something coming up that we knew would set him off, like a family gathering, I could give him an extra 1/2 to 1 tablet. It occurred to me later that I'm pretty sure the family members that only saw him on holidays probably thought I was nuts since he was so quiet and well behaved!

And yes, I found that maintaining the dosage level rather than waiting until it was "needed" worked much better.

 

[notme]

Stephanie

I feel for you I'd imagine the Haldol is working pretty well. It's used quite often in psych hospitals and keeps people pretty mellow. Seroquel doens't always work quite as well (but seroquel is very sedating, too)

I was on seroquel for a racing mind issues--not psychotic or anything, but I simply could not shut my head off. It knocked me on my butt. I was a zombie on it--but I only took it at night--which is what it was prescribed for, and only 25mgs.

I now nothing about FTD--but I worked with ODD teaching special ed--and it sounds pretty similar to the displays you're describing.

You're a better woman than I. I know I couldn't deal with it. I'd be a basket case. The strength you ladies display is incredible. There has to be a special place in heaven for CALS

I think the mental issues with ALS are way, way under reported!

 

[Katie C]

Patty.. there are researchers that are starting to agree with you. Even now.. some neuros are so attached to the "ALS doesn't cause cognitive change" line that they will treat the FTD as a separate, coincidental diagnosis.

 

[kmendsley]

OCD is a hard thing to go through as a bystander, and as the person going through it as well. Your husband is just trying to control something since everything in his life is going out of control. For me, I have OCD, when I found out I had ALS, I felt so out of control that there was no way I would be able to control my body anymore, I decided to control the end when it came. I made a will, and made it probably more detailed than anyone else has ever made it....down to each piece of jewlery I have and also to the songs that would be done at my funeral...what casket...etc. Sounds morbid in a way, but I saw it as something that one- would help out my family when it came to that point- and two it put me at ease knowing everything would be taken care of once I was gone. Best thing to do is steer clear and let the OCD play itself out. The more you resist it openly, sometimes the worse it can become. If you need a break, go ahead and take one...go take time for yourself . Soon your hubby will realize that 11pm at night while he is half way through the 'essential' cleaning that it can wait till tomorrow...but he has to realize this himself. Or it may take him cleaning it thrououghly then walking up the next morning extra tired and thinking, now why did I HAVE to do that task at that time again? Again, don't throw it in his face. OCD is a disease as well that has to be dealt with as ALS also has to be dealt with as well. As for the credit card, maybe get ahold on his specific card saying you need to verbally or written consent on any purchase. Your bank should be able to help you out with this...I know some parents that have put 'freezes' on their kids credit cards when they weren't responsible with excessive purchasing. I hope it works out for you...blessings of peace to your family.
Kell Bell

 

[Katie C]

Kell.... sadly what Stephanie's husband has been diagnosed with is something called Frontal Lobe Dementia. While it causes obsessive behaviors it is different from OCD because there is no awareness on the part of the FTD patient that they are doing anything in the least bit odd. And that realization won't happen because the portion of the brain that makes those connections has atrophied. It does sound like you are dealing well with your ocd behaviors and are to be commended for that!

 

[Phil's wife]

Thanks for all of the suggestions and words of support. The doctor has changed his medicine from Haldol to thorazine every 6 hours around the clock. That seems to have helped a lot as of now. He still has a few episodes of something he HAS to do and gets out of control angry if he doesn't get his way but those are less frequent. He had a night (woke up to him falling at 1am) of getting out of bed many many times for no reason - fell twice and almost fell too many times to count. What an awful night, we were awake almost all night. That is when the medication was changed and an alarm given to us that I hook up to him so I know when he is trying to get out of bed. I still sleep in our king bed with him but I sleep so deeply sometimes it takes a lot to wake me. He is still on ativan as needed too. Most of the time now he is very sweet and will take my advice on things he is unsure of -- like junk email offers.

The only activities I try to redirect are those that could be dangerous for him or are wasting money. It is difficult to watch him piddle in his office with computer equipment that he knew like the back of his hand and now he can't remember his email address or password to his laptop.

ALS is such a different disease in each person - I am sure there will be many different types of ALS found one day including a dementia subset. Perhaps all ALS patients are subject to a diminishing cognitive ability - it is just that some don't reach that area before passing. Like some can still walk and some can still talk and eat when they pass. It seems like the FTD patients usually had bulbar onset.