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marvlb

New member
Joined
Oct 2, 2008
Messages
4
Diagnosis
01/2008
Country
US
State
New York
City
Melville
My wife has ALS and Frontal Temporal Dementia. Diagnosed with FTD about 15 months ago. ALS diagnosed 6 months ago.She has lost speech and is having a difficult time swallowing. Now finding it hard to get up from a chair and out of bed. Doctors say a decision on feeding tubes must be made wihin 3 to 12 months. Neurologist, General Practioner, ALS specialist and our experienceed aide all recommend against its' use for her because of the combination of the two illnesses and the rapid deterioration she is expiriencing. She is also becoming agressive and nolonger can type or handle her normal chores of bookkeeping etc. The feeling is that the feeding tube in her situation would be almost cruel. ANY COMMENTS or THOUGHTS?
Thanks
Marvin
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Marvin, welcome to the forum. I'm sorry you had to find us under these circumstances. There are some forum members with similar situations to yours, hopefully they will see your post and respond.

take care. :)
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Marvin, if you have read any of my posts you will know how I feel about this kind of recommendation. The medical profession, as a whole, has one standard recommendation and that is DON't DO IT.

What do you want? Follow your own heart and do what you want to do - don't listen to them if it contradicts what you feel in your heart!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Marvin, I'm so sorry for your wife's deterioration, and this decision that you have to make.

First, do you know, or can you guess, what her own wishes would be? Had you ever discussed this, even in passing? Her choice, if you know it, should be the deciding factor, of course.

There are two separate emotional issues going on ... one, the FTD, and the other, the emotional lability of ALS, which can be treated. I suspect that the aggressiveness is connected to the emotional lability, which means that with the proper medication, she would not be as aggressive or hostile.

If she has trouble swallowing, this could be contributing to her rapid decline. Has she lost much weight? If she can keep her weight up, possibly her progression would slow.

This is a very, very personal decision. As I see it, the pro's of the feeding tube are that she would regain strength, and possibly slow down the progression of the disease. Also, she would be free of the fear and frustrations in swallowing.

The con would be that if she is not rational and is agressive, management of the feeding tube would be very difficult, and possibly distressing to her.

I'm sure you will make the right decision for her, but I know how hard this must be.

God bless.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Marvin - my mother had FTD but not the combination with ALS. Fortunately she could not be as aggressive as she would have liked due to inability to use her hands. And of course, language was gone - before any other symptoms. Since I knew what her wishes were that was my guidance. Like previous posts - follow your heart and what you feel is best for her. Unfortunately, she is no longer able to make an informed decision. She is blessed to have your loving care.

Sharonca
 
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