things we learned today

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gooseberry

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Steve started his VA assessment today. It will go thru Friday morning. Here are a few things we learned:

Losses happen even when you dont know it.

Being stubborn doesnt get you very far with this disease. Using your tools is what helps maintain independence.

The more stubborn you are the more tools you end up with.

ALS is even stranger than I thought. At our support group we ranged in age from late 30s to 80. Thin, heavy set, slow progression, 5 months from walking to trache. Odd and mysterious disease.

If a contractor is reliable and gets good recommendations, people wait 6 months to start renovations and pay more for it.

If your pals dies from a fall or for some other reason at home, call your als team immediately. Your als team needs to speak with the coroner so cause of death is als. One woman was getting nothing financially with 2 small kids because her pals cause of death was barbituates.

More to come....
 
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BlueandGold

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Been thinking about you guys all day, wondering how things went. Keep us posted. I'll be praying for you both.

Vince
 

gooseberry

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Thanks Vince. It is kind of grueling but so much better for us than the als clinic we also go to. They tend to gloss over things. The VA has been very thorough and supportive. It feels like a family because the team is small but so knowledgeable. They will talk with my son, or any family member with questions. The care Steve gets there is wonderful.
 

scaredwifetx

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I am glad you updated us. I was thinking about you and Steve today. Some useful and tough advice. Stay strong and thanks for sharing. You have a village beside you.
 

affected

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Thank you for the update, there is some wonderful advice in what you heave learned and shared!
 

Nikki J

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The discussion specific to the death certificate and VA has been put into a separate thread in military. It is a very important point so want it to be easier for future readers to find
 

gooseberry

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Thanks Nikki.
 

gooseberry

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Was told today you can have a standing order for anxiety meds and morphine. This can be filled when you think your pals may need it soon or when they want it. By that I mean when they are ready to come off the breathing equipment and pass peacefully.

We were also told today about a man who started sleeping more, was confused, etc. He was getting co2 buildup. He came to the hospital(a friend told the wife this was an emergency) and loss consciousness in the er. He was admitted and put on his bipap. He was doing well.
 

gooseberry

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Learned an important lesson today. Do not ask questions you dont want to hear the answer to.....
 

Buckhorn

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I have read your posts with interest goose. I am thankful to know that a standing order for morphine can be arranged for, when the time comes. I am fairly sure my husband will refuse a vent. He does have a durable POA and living will, but I am listed as the person who makes the last / final decisions. My greatest fear is that he will suffer near the end; something that I will do almost anything to prevent. We will ask the question (that we must know the answer to) regarding morphine to be kept on hand or at the disposal of hospice nursing. God bless you with all you are going thru. You are in my thoughts.
 

4tloml

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Learned an important lesson today. Do not ask questions you dont want to hear the answer to.....
Truth for certain! My PALS requested cognitive testing himself because he's been getting so confused, can't think through things, remember a series of steps, etc. On the way to last clinic he said he was going to mention it again and I asked if he really wanted to know if he did have FTD. He said "No." :/ But he requested it anyway and it's scheduled for next Tuesday.
 

affected

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@bucky (can I call you that - being an aussie we always shorten things this way)
I can tell you in all honesty that my Chris had a very peaceful passing. He was at home with only me caring for him in his last days (it was over Easter so all services were closed). If you can work together to decide what kind of end you both want, while nothing in life or ALS is certain, it can be achieved. We wanted him to die at home, and I felt confident with phone support from palliative care to give him dignity and peace in passing.

@4tloml - wow, that's a big one indeed! Be prepared he may back out at the last minute, but if he doesn't back out, I hope the testing and results help you both. Please let us know and talk any of it through before or after if you need to. Of course you can PM with me as well if needed.

Steph, that's a huge one. I hope you are ok? What a gruelling week it must be xx
 

gooseberry

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Today is an inpatient hospice tour. So excited...not. At the same time, if it is an option we need, I will know the way it all works.
 

Nuts

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Steph, I know how tough it must be to take the tour, but I'm so impressed that your hospital gives you so much information. I'll be thinking about you today, and I do appreciate you sharing what you're learning.

4T, I wonder how your husband will react to the results. I asked mine early on if he wanted me to tell him if I saw cognitive changes and he said no. I've mentioned struggling for the right words to his neurologist's PA and ever since then he blurts out a less appropriate, or even wrong, word rather than searching.

It was a bad weather night all around us last night--tornados touched down and the wind howeled, but we seem protected on our creek on the lake, and the sun is shinning this morning. Also, my sweetie is awake (yesterday he got up at 2:30 pm, today he woke at 5 am...I'm so confused :) ), so I'll call this a good day in the making!

Becky
 

gooseberry

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Great attitude Becky. I hope your day is wonderful.

The info wasnt offered about hospice, inpatient respite, etc. However, asking the psychologist and social worker has yielded a wealth of information. Cheerleader knows this psychologist. She is just wonderful.
 
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