Newbie caretaker

[Pattyssister]

Hello all - my sister was diagnosed with progressive bulbar palsy ALS on 7/2/14. She had symptoms for a long time and was given the run around by many doctors. One doctor two years ago gave her a referral to a shrink and said "go be well." This was after she tried to convince him that her tongue felt funny and that she couldn't move it the way she previously did.

Her neurologist in Florida said "I am sorry, you have ALS. You have a few months to live and I am referring you to Hospice."

My sister moved in with me in August. She has lost a LOT of weight over the last year (50 to 60 pounds). At this point, she cannot eat, she drinks 8 to 10 ounces of water a day. She has refused to get a feeding tube. I don't agree, but if this is her wish, then I told her I would respect that. It is very difficult to watch her disappear and get dry heaves after trying to take any medication.

I think my sister would survive for several months with a PEG tube, but the way she is now, I don't think she will survive more than a few weeks.

Thanks for listening.

 

[Graybeard]

Welcome to Heartbreak Hotel.

You are right. I say eating and drinking are highly overrated. I lost 66 pounds before the peg tube, and have gained nine pounds back since. My decline is on a much gentler slope now.

GB

 

[cheerleader]

But she can eat! My husband survives on Boost Plus liquid, thickened. If she can drink water, she can get nourishment without a peg. He chose no peg as well. And honestly, maybe your sister has given up and chooses not to eat. Surprised they gave her a "time". If you read the forum enough, you realize no one can predict! You are a good sister during a horrible time. So sorry. Donna

 

[MaxEidswick]

ALS sucks, but high calories are one of our few defences, Sandy has me on ~3,000 cals/day drinmks onl \y ...

 

[lgelb]

Dear sister,
If Patty is still trying to swallow pills, can she have her meds as liquids? Many are available or can be compounded that way. Her pills can also be ground into vitamin water...if water is all she can do, I would recommend "regular" VitaminWater and/or water to which you add liquid vitamin/mineral complexes, dissolve sugars/drink mixes and so on. If she can swallow thicker liquids, Max's smoothie/soup recipes in his posts would be a great option.

Of course, this is all for comfort. As you say, she will not survive forever on 8-10 oz of liquid and nothing else. You are doing a great thing by opening your home to her. Is she simply tired of living or does she fear the tube? There are photos and videos on this Forum and elsewhere that might help her learn more, if the latter. There are also many posts about what is entailed.

 

[Pattyssister]

Thank you all for your responses. It is somewhat comforting to know that others understand where you're coming from.

Just a quick update. Patty continues to weaken and is unable to swallow water; however, she can handle very small amounts of crushed ice. Her speech has deteriorated a lot. If she takes her time and goes very slow, I get almost all of what she is trying to talk about.

I don't really think she is afraid of the feeding tube. She just says she is so tired and is at peace with her decision, which all along has been not to prolong her life in the condition that she is in. I am not in agreement, but I am not the one suffering, so she is the one to make the decision & I am the one to respect that decision and help keep her as comfortable as possible.

Again, thanks for listening.

 

[cheerleader]

Party's sister, kudos to you! It is HARD to honor our pals decisions when we don't agree with them. But as the psychologist said to me, pals have so little control over their lives, we need to give them the control over decisions They can control! Tough for us, but the right thing to do.

 

[Diane H]

If she is having any pain or anxiety, there are medications that can be absorbed by a patch on the skin or a few drops into the side of the mouth or under the tongue and absorbed there rather than swallowed. Some people slip into some level of unconsciousness and don't seem to experience the discomfort and anxiety and restlessness of air hunger. If she begins to be uncomfortable in that way, Hospice can start an IV for medications to ease her. Those medications may shorten her life a little but she will be far more comfortable during that time. I am so proud of you for being with her and allowing her to die on her own terms. That is a true, loving sister.

 

[Janie H]

God Bless you, sounds like she got a bad deal, I wish she would consider a tube but it is her decision.

Janie

 

[davbo49]

im so sorry. als it dose suck.

 

[poppies]

I see your last post was in July. How are you and your sister getting on? My husband has PBP and also does not want to consider a feeding tube. We are still managing to get him his calories in various ways I would be happy to share with you. How is your sister now?

 

[Pattyssister]

Thanks to you all for your posts. I appreciate your thoughts, suggestions, and kind remarks.

I am sorry to report that Patty passed away October 21. My other sister and I were with her. It was very peaceful, no struggle to breathe... just took her last breath and that was it. She was on a low dose morphine patch.

Patty was a really good person and a wonderful sister. I will miss her immensely until we meet again.

Thanks again.

 

[LoveMyKids]

I'm so sorry for your loss. I am glad that you and your sister were able to be with her.

 

[MaxEidswick]

our condolences ... we never forget

 

[cheerleader]

What a comforting way to go- with sisters by her side. Now rest and regroup,knowing you were a loving sister who did her best. Donna