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faithandlove

Distinguished member
Joined
May 22, 2016
Messages
174
Reason
PALS
Diagnosis
06/2016
Country
US
State
NV
City
Reno
Hi everyone,

As hard as I try, nothing sounds good to eat. I was suppose to get a device that would feed me while I slept, but it never came. When I saw the doctor last Friday, he was shocked that I did not get it. Everyone was pointing the finger at everyone else. In the meantime, I've lost an additional 12# this month alone.

My caregivers are pushing water and liquid food in me. I, also, had a bladder infection, and I think it is back again. My husband showed the hospice nurse the color of my urine (brown), and he almost threw it in her face. I'm so glad he didn't. What a mess this month has been.

My husband finally broke down and started throwing things, and yelling at the top of his lungs. After he calmed down, I told him that what he did was emotionally abusive and that I was afraid of him. I wanted to leave and live in a assisted living home. He had said some very hurtful things. He did not understand and thought I was trying to die. He apologized and is back to his sweet self.

I've always loved to eat, so this is new to me. I would never stop eating and try to die, but, because of my current situation, I pray each night for God to take me.

Forgive me if this message does not make any sense. I'm not myself at all and I'm so week. Hopefully, May will be better.

Hugs,
Deb
 
Hugs and prayers for you Deb and your husband.
 
Deb, have you discussed a feeding tube? Or is that not your wish?
 
Aww Deb
Sending you huge hugs.
Sounds like both you and your husband are really struggling, I hope that things calm down a little for you and they get that feeding device sorted.

Wendy x
 
Deb,
I'm so sorry and will keep you in my prayers.
 
Deb, I wish I could be there to help. All I can say from here is that a feeding tube might provide both comfort and nutrition. When my wife, who loved to eat, started on a feeding tube, I thought she would miss eating, but surprisingly she never missed eating. The feeding tube helped a lot.
 
Thank you for the kind replies.

I got a feeding tube last November. We did not use it because in late March I was suppose to get a machine that hooks to my feeding tube and would feed me while I slept. We were waiting for it, and we waited too long. I love to eat, so everyday I thought I would start eating again. We should have been calling them. Now I have be monitored on my tube feeding and water intake.

We are struggling, but that is part of the ALS roadmap.
 
Have you been checked to see if you have another UTI? These are nasty infections and you want to get on top of it fast.

We all struggle, we do our best, but believe me I felt like I was just bumbling along as a CALS. xxx
 
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