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Chase_Corin

Distinguished member
Joined
Nov 24, 2010
Messages
135
Reason
Loved one DX
Diagnosis
11/2010
Country
CA
State
On
City
Perth, Ontario
Well last month when we went to the ALS clinic the doctors thought that dad should have a power wheelchair that tilts him back so his head isn't listing forward.

Well dad dosn't want it because he thinks he will have too hard a time breathing. Because he has a weak diapraham I understand where he is coming from but he won't wear a neck brace or do anything to keep this from becoming a painful issue.

Mom and I have been looking for a wheelchair accessable van because it is getting to be way too much for us to get dad in and out of the car (a kia Rondo) whenever he has an appointment. So after doing some searches I came to him with 2 reasonable vhicles that my cousin the mechanic agreed to look at with me. Well dad says he just won't go to apointments anymore. That the doctors and such can't do anything for him so there is no reason to spend money on somthing he won't use.

So basically he is never going to leave the house after this christmas because that is how long we figure we have until we wont be able to move him around. Mom is frustrated, she can't reason with him. Lately we havn't even been able to go outside to tidy up for winter while dad is having a feeding through his tube because he accidently pulls it out. Then yells at us for an hour about not being able to hear him from outside. Then mom feels she is trapped in the house.

We are getting out once a week for several hours 11-5 normally on a friday but it just dosn't seem to be enough to deal with his pigheadedness. We make plans of what we want to do and dad shoots down all our ideas. Like putting up shelves in the garage to store leftover material from the bathroom reno. If we talk about any of our plans around dad he disagrees with them so mom and I do things without telling him but then I feel we are lying to him by omission.

Ugh! sorry end of rant, I am just frustrated about his lack of flexability.
 
He may have FTD. Don't feel bad. It's not your fault! there will be no reasoning with him. Y'all will just have do DO what you you think is best, no matter how it pains you.

Take a look at the FTD forum and the links to see if you get any clues about your dad's behavior.
 
Its okey chase. We gotta rant sometimes. My husband takes his phone outside with him and I keep mine on me..so if he needs me he can call. Even a walkie talkie would work. That is if I weren't vacuming and was answering my.phone. ill never live that one down. Don't feel bad about not telling him. Your not lying. Your adapting.
 
Gee - that's hard spot Chase.

Since we're in the same part of the world and likely frequent the same clinic - I was wondering if a home visit from ALS Society would be helpful. I received a call just last week to set up such an appointment, and the lady is very nice; she mentioned we'd discuss a lot of things. Also, the Physio lady at clinic, told me she could send someone out if/when needed. A third party may help. If you have a meeting at his house - he will feel "in charge" and maybe will become more agreeable than he would otherwise.

I can only imagine that your Dad is reluctant to give up "his" responsibilities - I know how that feels. AWFUL! It's a control thing. We are planning a move and there's no way in hell that I'm ready to relinquish responsibility for MY stuff. Yet, I know, I can't physically do it all. It's really hard. Personally, I hope my stubborn streak will keep me alive longer- but I hope it doesn't cause frustration to my family.

I hope that your Dad will soon give up the reigns so you can get done what needs to get done. It can no longer be his way or the highway and I bet he knows that down deep...

Wish I had more insight for you
 
Chase,
I'm so sorry to hear of your problems with your dad... Sending hugs and prayers your way!

Jen
 
Chase, I understand your frustration. Just do your best to help your dad adjust. If needed, omit things and do not feel guilty about it. If you save him frustration and arguements, it is probably better for him.

As far as not being able to go outside (or anywhere else in the house,) we have purchased a vibrating/chime pager off of the internet. It is bassically a button he wears around his neck and I carry the pager with me so he can let me know anytime he needs me. There are also things called nurse paging systems that work about the same way. If you start researching it online, you will have a few options. We also tried a wireless doorbell from our local hardware store, unfortunately, the button was too difficult for my pal to push. I hope you find something that will help with at least this problem.
 
So sorry for the frustration you guys are feeling. Do check out the FTD section.
Elaine may be right about a visit from the ALS society, sometimes a third party can get through.
 
Chase, I am sorry for what you and your family are going through. My Mom is stubborn at times. She will not use the BiPap machine she got several months ago. She still try's smoking too. She has to hold her lips together with her free hand. But now it's hard for her to even 'inhale' the cigarette...I have been on the FTD site, she does have it. I hope things get better for you guys.
 
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