Wife has Bulbar ALS

[soakland]

Hello:

I was reluctant to post here because we don't have an official diagnosis yet. My wife's father died of Bulbar ALS at age 66. My wife is 60 and she has had poor speech for over 2 years. She has lost significant weight and is probably down to 100 lbs now. She is 5'2". Her speech is very poor now and can hardly speak. One night this week she was coughing. Complicating matters is I believe she has dementia. She has rejected me as her husband and stays in her room with the door locked. I think she is nearing end stage, or in end stage. What can I do without her consent? Call rescue? If yes, when? This is an extremely difficult situation. We take care of my father here in FL (who is 95 and healthy), and my daughter is 19. I go to counseling to help deal with it. My wife has been on Carnation drinks for months and nibbles on some occasional food. Has anyone ever heard of this kind of situation where the patient refuses all help? She thinks she has "conversion disorder", she said that her psychiatrists diagnosed that. I don't believe that at all. My wife also has Bipolar Disorder.

Any ideas?

Thanks for reading this.

Scott

 

[fattiemcgee]

If you fear for her aafety, absolutely call PD or FD. I'm sorry you're dealing with this. I'm sure it's complicating things with the dementia.

Look up the non-emergency number for either and ask for help. Tell them the situation so they approach with tact.

 

[Lixen]

Sorry to hear about your dilemma. Has she not been seen by a MD since slurring/weight loss began? She's still seeing psychiatrists? What meds does she take, when was she diagnosed as bipolar and does she have a relationship with anyone? Your daughter perhaps?

 

[GregK]

There is a dementia associated with ALS: FTD.

And yes, it can cause pALS to act out against CALS.

 

[vw-fl]

Scott, "What can you do without her consent?" "My wife also has Bipolar Disorder"

Although I am not advocating that you should do this, here in Florida we have what's known as the Baker Act otherwise known as the Florida Mental Health Act. If she is a danger to herself or others, or seriously neglectful of herself she can be involuntarily admitted for up to 72 hours (or voluntarily) to a facility to be assessed. Her doctor or the police can initiate the process. I would suggest you talk to her doctor first to see what he recommends.

So sorry you are going through this.

vw

 

[lgelb]

Is there any documentation relative to her end of life wishes, Scott? Do you have any power of attorney?

If she's losing weight rapidly, a feeding tube that she probably can't give informed consent to is probably the only significant life extender, and it's doubtful that she could be cared for at home even if she had that.

She will also probably need BiPAP soon, if she doesn't already.

If she has something to live for in her current state as you see it, you can certainly get her "rescued." But be aware that from that point forward, the laws of your state, the recommendations of a psychiatrist (especially if you do not have power of attorney) and the regulations of her health plan will govern what happens to her next.

I would before you do anything else seriously think about what "success" in this venture would look like -- you have seen bulbar ALS without dementia, it sounds like-- and whether it is worth achieving. You may want to redefine the outcome measure and set the wheels in motion for that outcome before/instead of involving third parties/the public sector.

Best,
Laurie