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Thank you all. I will bring up some of these things when we meet with the neuro this week.
 
Oh wow, was this surgeon recommended by your ALS clinic? There is no reason for general anesthesia. The surgeon who did Matt's does all of them for the Duke ALS Clinic, so I was very comfortable. Twilight sleep, radiology to find the right spot from inside the stomach, and a quick poke. If the guy you were scheduled with can't do that, find another.
Becky
 
Hi,all.

Haven't posted in a while, been a very busy month, (but when isn't it, as you all know).

We ended up being denied any home health care, nursing or otherwise, they said it wasn't 'medically necessary'. What a joke. I am pursuing some part time help out of pocket, I need to stay strong for him. Went to the clinic at the end of last month. It may be our last visit. We were there most of the day and my husband was so exhausted, he cut it short himself without seeing the final appointment and I brought him home. Getting tired always makes him progress and he doesn't recover to what he was before we went. I know this disease doesn't have a linear progression and he is declining again. He doesn't want to go back to the clinic. He says he feels so much better not thinking he has to go back there. He is using the trilogy intermittently during the day now plus cough assist, suctioning, nebulizer...etc. He is still eating by mouth fine. He asked to bring hospice in. I don't know where this will take us, but since they have started my husband is so relieved and his blood pressure is within normal range again, which it hasn't been since he was diagnosed.
Thanks for listening.

Annie
 
Hi Annie, thanks for checking in and glad you're getting help. Let us know if you need help with that process.

What happened with the feeding tube?
 
Long story short, he is adamantly opposed to it. He made the decision after long months of consults, research and talking with other pals who have had it done. He is at peace with his decision. He was always opposed to it but agreed to the consults. What a monster this disease is. I am heartbroken. He is such a good man, this is so unfair for all our pals.
 
Thank you for updating us. In a way I'm glad that I don't really understand what you and Sue are having to deal with with Home Health. To much vent, to little necessity, sounds like a horror show to me.
Going on hospice and not going to clinic anymore sounds like a good decision. More help at home, less exhaustion to come. Conserving energy seems paramount at some point so there is enough energy left to get through a normal day AND be able to smile.
 
Yes, it's beyond belief that they deny ALS patients care. This is such a complex disease, with complex care requirements, it's amazing they just drop off all these systems and leave. What to people without a partner do?
 
I interviewed an agency today and am hiring an aide to come in one morning a week, so I can run errands, make dr. appts. etc. I liked the supervisor who came out, hopefully my husband will like the aide they send. I know I should take advantage of that time to get things done, but I would like nothing more than just to go in another room and do nothing. I made a spreadsheet of the tasks I need to do for my husband every day and keep it on my desk so I don't forget anything, as sometimes I feel like I am just in a fog. I was telling the nurse supervisor of some of the health issues we have had with him as a result of this disease and one of the incidents was 4 years ago and it seems like yesterday. One of my children started and finished college in that time, it is such a blur. I dropped her off and the next thing I knew I was going to her graduation, lost years.
 
You should absolutely take some of that time with an aide to go somewhere and do nothing. I know the errands need running, but you need fueling first. I remember stopping at a highway reststop one day to just sit and nap. It was heaven.
 
Hi Annie,
Good luck with the aide- I hope your husband likes him/her and it works out well for you. I have a morning a week and it’s a godsend. I have the same dilemma of whether to spend it on errands or me time. At the very least I try to alternate so I have a super busy morning getting as much done as possible one week, and then take some time for myself the next week to meet a friend for breakfast or go to a yoga class or collapse in a heap or something. I hope you figure out a way to manage it so you get a little down time for yourself.
My husband also has refused the stomach tube/PEG so far. It doesn’t seem to be a very popular decision amongst PALS. I totally respect his wishes on that and I think I would feel the same, though I am a little nervous how it will affect him down the track...time will tell.
Tara
 
Thank you. Yes I think I will try to use it to take a break as circumstances allow. The first visit will be all training her on the routine. I am dreaming of getting a massage some day and I never even wanted one in my former life when it was an option.
Tara, I feel the same way. Respecting his decision, and think I would feel the same, but nervous about it as well. Everyone needs to do what is right for them.
 
One of my daughters asked me today if the disease is affecting my PALS thinking, She has observed that he is not only different physically but mentally. His cognitive skills are ok, but when it comes to family situations, sometimes he loses his patience and/or makes observations that aren't accurate. I can't imagine how he must feel every day fighting this disease. But now I find myself second guessing whether it is him or the disease speaking, Does that make any sense? It is hard to put into words. (He can stil speak, although, we have observed that others need him to repeat what he says or we translate,). My daughter thinks that I need to push back when he wants me to do something that seems unnecessary, instead of just going along because he is ill. I thought because he has a lot of time on his hands, he notices a lot of projects around the house that he can't do himself but wants me to take care of, but now I wonder.
 
I was just reading on this myself. About half of all patients with ALS have cognitive changes according to recent studies:

The ALS Association

I see this same thing with my Mom (CALS) and Dad (PALS). I don't think he realizes it happens, but when he has a thought, it's her body that has to execute that thought. So she ends up trying to live out two peoples lives in one body. Part of the cognitive changes that can happen is to not be able to empathize with the other person.
 
Thanks, interesting article. His cognitive skills are still intact, so I hope those aren't affected going forward.

Since he has made the decision to let nature take its course and not to have invasive measures, he is much calmer. He says he knows what is right for him and feels happy with his decision. His blood pressure has been through the roof since he was diagnosed four years ago and now that he no longer goes to the clinic, it is back to normal. I have been very stressed (more than normal) but think I am starting to adjust to this new phase now that I see this is what he wants. I am so scared of losing him, but my priest says don't jump to the end and try to live in today. What a horrible disease this is and what a brave man he is.

I have an aide coming every Thursday for a few hours and he really likes her, which is a relief. Hopefully it will help me keep from getting more burnt out.
 
Glad to hear that he takes comfort in his decisions and that it gives him better quality of life right now. Still the effects of stress and mental troment seem underrated in dealing with this disease.
Very happy hearing about the aide and some off time for you. Maybe from there you can expand the hours, introduce someone else. Baby steps, you know.
Sending you lots of strength!
 
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