Intro and a question

[parakeet]

Hi all,

My sister-in-law (my brother's wife) is in the last stages of bulbar ALS -- only a bit of movement possible in fingertips and lower legs. She can still talk, but my brother can interpret only about half of what she says. She coughs and chokes on her saliva many times during the day. Her difficulty in swallowing mushed foods is declining rapidly.

Since my brother spends most of the week in the facility she is in and can't commute from his home, he rents a room for those days. I flew up from Florida to stay at the house and take care of my brother when he is home.

Here's my question: My brother loves his wife of 25 years and is in agony over her rapid decline (her symptoms began only last June). Seeing her rapid decline and increasing discomfort has him wishing that she would die sooner rather than later, for her sake as well as his own. Yet he thinks he's selfish and cold for almost wishing she would die. I'm far enough removed from the situation to understand his feelings, but he feels tremendous guilt for even having them. Are these feelings normal? Do primary caretakers sometimes wish it was all over with already?

Thanks for any responses.

parakeet

 

[affected]

You can use the search function here, or just look back through this section to see what CALS go through

 

[lgelb]

Parakeet,
Thanks for helping your brother out. The answers are yes and yes.

That said, usually there is a way to deal with "increasing discomfort," so if you can tell us more about what his wife is suffering, we can probably suggest some options to address it.

Best,
Laurie

 

[soonerwife]

So sorry to hear about your SIL. It is not selfish for your brother to not want his wife to suffer. I know it feels that way. Watching my PALS suffer is one of the hardest things I have had to do. I think that anyone who is a caregiver feels this way at times. ALS is a devastating disease.

 

[Narrowminded]

Parakeet - please assure your brother that this is totally normal. I think as primary caregivers and many times spouses seeing them like that seems worse to us and the alternative while at the same time we don't want to lose them.

I am so thankful you are there to help your brother and I am so very sorry your family has to deal with this disease.

We are all here to help.

Hugs,

Sue

 

[parakeet]

Thank to everyone for your responses. I'll forward this thread so my brother can read them in private.

parakeet