Husband with ALS, not coping well

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SherylJ

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Joined
Nov 8, 2012
Messages
14
Diagnosis
11/2011
Country
US
State
Washington
City
Yakima
Hi, I am new to this forum. My husband was diagnosed with ALS a year ago. We have been so busy with doctors, and finding out that not many are very familiar with ALS. We have a new challenge, he is now experiencing FLD. At a loss at how to help. The medication doesn't seem to work all the time. When he is in one of these episodes, there is no working with him. I work in the medical field, and am frustrated beyond belief! He needs medical care, as he is impacted, but won't go. He refuses to turn over power of attorney. Any suggestions? Nobody seems to be able to get through to him :?:
 
Sheryl I am sorry for what you and hubby are going through. That impaction issue is very serious. Do you have any home care nursing service that can come out and give him an enema or disimpact him? That is one thing that you needs attention asap. Big hug to you.

Laurel
 
Sheryl.. what meds is he on? We found it took something of a cocktail of anxiety, depression and psychotic meds, and frequent dosage adjustments, until we found the right one. I'd also contact your local ALSA and talk to the social worker to see if you can get a recommendation for an attorney that has some knowledge of working with dementia cases. Your local Alzheimer's Association might be helpful there too... while this is a VERY different form of dementia a lawyer with knowledge of the field might be able to help you with workarounds for the power of attorney and healthcare POA. You're on a rough road... please be sure to come back with questions.
 
I appreciate the responses. It carried on through today. He doesn't remember going to the Vet Clinic in Walla Walla. Insisted we needed to go. Was up at 2 in the morning. Waited until 8, then started calling around. Doesn't seem to be much help out there as he is refusing all help. We are headed to Seattle Mon. A.M for a dr appt. Hopefully he'll have some better options for us. Thank you again. Sheryl
 
If he is a Veteran, you should be able to get help through the nearest VA hospital.
 
He is on a variety of meds. Methadone and dilaudid for chronic back pain (since 94). Baclafen for the muscle spasms, and twitching. Muscle relaxers, rhilutek, serequel for the mood swings (for bi-polar disorder I think that he has stopped taking this.) Blood pressure meds, and asthma meds. I think that's all, I know that the methadone causes constipation, but since I can't get him to go to the local dr for this, and does not let me know what he is taking, how many and what. He feels like I am taking all control over him, I probably am with the important things. He wants to drive again...that obviously brings up a whole lot of angry words. It's just too much of a risk.
 
No, not at this time. He refuses all help. Thinks that we are trying to have him commited. He seems to know that he is having some serious issues, but he will tell you he just doesn't care anymore.
 
He went the the VA clinic in Walla Walla for testing. They thought that he had an abdominal aneurysm, thankfully it wasn't the case. The took som x-rays, and deteremined that he was impacted and told him he needed to see his dr. Until he is ready to go back to the dr's, it won't happen. I am hopeful that the appt with his neurologist on Mon. will make him more agreeable. He wants to have the peg procedure done, and possibly a breathing tube or as I know it a tracheostomy.
 
HI

If he is truly impacted--waiting til Monday for a doc appt could be a serious mistake. If it's been several days without any bowel movement, or liquid only that can also be cause for concern, as sometimes some liquid can move around it.

There is a risk of the bowel perforating. Has he been diagnosed with FTD? I ask because is it possible if he's not letting anyone know what he's taking that he's taking too much of something? Methadone and diludid on top of the others can definitely be too much if he's taking more than he's been prescribed.

I have to take colace daily because I take narcotic pain relievers. Is he having any belly pain? Distended stomach?

If he does develop sudden severe pain -- or even worse, if he has pain that suddenly stops- that can be a medical emergency and you'd need to call 911. I'm really not trying to alarm you, but there are a lot of risks here.

Can you call his doctor and ask for advice based on the FTD diagnosis? If he's not of sound mind currently, he can be made to be treated--although I realize that's not a road you'd want to travel, of course.

Please let us know how he fares! Hang in there. I'd suggest a fleet enema, but not without doc approval at this point.
 
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