Not open for further replies.


Active member
Jun 23, 2005
Hi everyone,

I am happy to report to you all that the Hospice nurse we HAD is NO LONGER..... :) Enough was enough. The last time she was out to Mom and Dads I felt way too much anger. She for the last time treated us with rudeness and I left the room. I went in by Dad and said "I'm sorry Dad if and when she comes out again I will not, I have had enough." That same day I contacted Moms social worker through Hospice and lets just say the ball was rolling. We met with the new nurse and from that meeting I could tell she is a perfect match. She was/is kind, warm, compassionate and she felt bad for us having to deal with the other nurse and her bulldodo. We as caregivers have a ton of things to deal with we don't need added stress.

Pat, I'm going to try to call you tonight, we have some unfinished business. :) Keyword is TRY.
Jackie, come on it's not that cold in Wisc. Will do have heat and heavy
jackets. I too use to live in Calif. and the weather was better there but one does get use to it here. Now I hear Canada is a heck of a lot colder, is there any truth to that?

Another happy note is I've got mom up to 19 oz. at a time in her feeding tube at least 3 times a day. YEA! She still takes soft foods by mouth but very slowly and carefully. She has been eating high calorie/fat ice cream a couple times a day also but this makes her cough more due to the milk base. These coughing spells are horrible, I wish I knew what I could do to help. No way shape or form does she want the suction device. She is afraid that it will make her vomit. I'm not sure of the name of the prescription that she was put on to dry up some secretions. I THINK antatiptaline (sp?) So she takes them and it over dries up her mouth. I try to get her to drink more water but she says it's hard to keep from chocking on that. I wish there was a book that told what someone with ALS is going to go through and with that, some ideas/tricks and/or meds. that they could try that MIGHT help. But what better help is there than all of you who are willing to share your experiences.

I must close for now my little ones and my hubby are looking for me. Take care and as usual thank you for being out there. Good night!

Sweet Dreams,
Hi Shelly! I am glad that you are happier with your new nurse. You are right. Who needs added stress, and especially of that kind.

Call whenever. Another Saturday night at home alone. Oh well!

"Now I hear Canada is a heck of a lot colder, is there any truth to that? "

There is absolutely no truth to that whatsoever. LOL!
We only get about 3 weeks of -30's in Jan or Feb, so what's the problem? If we can handle a lifetime with this kind of weather, you can see why we can handle ALS. We are true 'survivors'!

Anyway, I have re-booked my site for our 5th wheel in Yuma for January. Anyone is welcome to come for a visit. MUST LIKE DOGS! LOL! If anyone has a loved one that they would like to take there for a month or two, I would be happy to help out and give you some relief. Jack had so much fun there and I will always have those wonderful memories. There are lots of people there willing to help out, because they don't have too much else to do. All retired.

I also have a ramp system with a Princess Auto lift that worked to get Jack into our camper. We stayed at the Foothills Village RV Resort.

Quality of life is important to all of us, but in particular anyone who is challenged.

Shelly, God will give you the strength that you need to handle all of this, and you will learn to be an excellent juggler. By all means, get your support here. We all love you. You are now 'family', like it or not.

Love to all, PAT 204-723-2176

ALS - About Loving Someone (still love it)
Not open for further replies.