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affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I hope you find that balance to make sure you get what you need.

My Chris had FTD so was paranoid towards me and had no empathy, as well as no idea of safety and the need for it (cause and effect).

You do have rights and needs, that's where the balance comes in to allow you both to be looked after. Let us know how you go
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Jeffery, my husband is thoughtful and concerned about me--all of his actions are about preparing for my future when he's gone, and even so I've heard the "I never get a break" response also. The thing is, we don't get to go to sleep and leave everything in someone else's hands. We also have to live their life and then try to find time for ours (just give me 10 minutes to dress, please). You know all of this, but sometimes our poor CALS lose sight of it in their pain and fear.

I also reached a point where I had to just accept unsafe transfers etc, as long as they endangered no one else. In his situation I'd push my limitations also, but I finally refused to keep helping with slide board transfers because they hurt my back. It's ok to draw the line where we are put in danger.

Baby steps...
 

Dave Kerwood

Senior member
Joined
Nov 29, 2015
Messages
716
Reason
Lost a loved one
Diagnosis
12/2014
Country
UK
State
South Yorkshire
City
Barnsley
First... Merry Christmas Jeffery

Second... I know it is easy for me to say to you "You NEED time out" as although my situation is nothing like yours but a while ago I got to breaking point where I thought about walking out and leaving there and then, I gave it one last shot and took Julie to one of the kids without notice and then drove for 7 hours to Cornwall (I couldn't get any further away from home if I tried, well not without a passport anyway), I spent the complete Weekend walking cliffs, walking, thinking and walking some more. I did not return until Monday.

That was the time that I could hear my own thoughts for the first time in months... I came back a new man, a different person... Yes, I walked back into the fire again but I had a rest for three days and the kids now understood what it was like when I wasn't there, so I fixed a lot of issues by walking away there and then.

What I am trying to say is that you are NOT a robot and if you break then it all goes wrong, and very fast.

I turned down every offer of help, thinking I could manage on my own... I clearly couldn't cope at the time...

So, take some time out, NEVER refuse offers of help, NEVER feel embarrassed to accept offers of help & ALWAYS look after YOU first... A broken you would be a disaster for everyone...

Please take my advice... It is good advice... Honest...

Dave x
 

pdcraig

Distinguished member
Joined
Mar 2, 2013
Messages
101
Reason
Lost a loved one
Diagnosis
09/2012
Country
CA
State
ontario
City
oshawa
Hi Jeffery, I think your wife must know Ferd, my PALS. Bedtime is always a struggle for us too. He also refused the BiPAP machine for months. I got him to try it for as long as he could stand it each night. I explained if he was having trouble breathing there was no way he could get a good nights rest. It took about a month to get him to the point where he would wear it all night. We found the combination of a nasal mask and a chin strap the best fit for him. He couldn't stand the full nose and mouth mask. He wasn't keen on the hospital bed at first either but did spend a lot of nap time in his lift chair. Is there anywhere she is more comfortable?
 

Jeffreyp

Active member
Joined
Aug 14, 2013
Messages
36
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
MO
City
Cape Girardeau
Thanks all for the support. She is comfortable on love seat but it takes arranging 5 pillows and 2 or 3 hand towels to get her there. I will try the chin strap with nasal pillows on bipap.
 
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