Giving up hope

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affected

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Robin how are you doing now, please do keep talking here.
 

Nuts

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Robin, as a CALS, I wanted my husband with me as long as possible. At some point, I finally realized that I needed to let him drive the train. We had some crazy adventures during his progression, but we had means to do what he was up for, and I was at a point in life where I could devote myself to him 24/7. Only you can determine what quality of life means to you, and the people around you will determine how much support you have. Even knowing that he was dying, my husband wrung whatever he could out of every day for almost five years. As tired as I was, some of our adventures were the absolute high points of my life. Then one day he knew that it was over and he let me know that it was time to remove the vent. YOU get to chose. If what you are giving up on is a cure, then I get it. If you can adjust your expectations and find new ways to enjoy the time you have at each stage of your progression, then you may have much longer left than you think. I think acceptance was important to his ability to shift his expectations, but this was a guy who mastered the art of stupid wheelchair tricks only after he finally got into that chair and realized how much freedom he reclaimed in that act.
 

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Hi Robin, Do you have family or friends around? You are now part of a community here. 💚
 

RobinMc5050

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hi Sammy. Thank you for your response to my post. I too feel the same way about people telling us to move each day to its fullest etc. it seems like each week at the very least I am waking up with another inability. My disease has started in my hands in my arms and I am presently unable to do so many things. Feeding myself is one of them. Also just brushing my teeth is difficult. Washing my face. Taking a shower it’s been long ago not an option.

My legs still work but they are definitely getting smaller and smaller and the muscle is obviously deteriorating there as well. My hands and arms look skeletal. My throat has deteriorated and my tongue has said classic signs of ALS. So I do have a lot of symptoms that are significant even though I was just diagnosed in July.

What you have to understand is that I have been symptomatic for two years but my neurologist was bent on finding another disease other than ALS that I was afflicted with. That finally didn’t work he reluctantly went ahead and diagnosed me with ALS. that alone was very discouraging over that two year. Period.

My arms are so weak that I am unable to carry anything. I have to fill my water bottles 1/4 four or I can’t lift them to drink from them. I don’t mean to sound of gloom and doom but just giving you the facts. I can’t brush the hair out of my face I can’t scratch when I itch it’s just so much. I really don’t think that I can manage to go much further without hospice becoming involved and somehow release me of this horrible disease. I would like to hear back from you or any other posters that have a response to the above.
 
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Sammy88

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Hi Robin
So glad you popped back. You certainly have loads going on. I know the pain of waking up in the morning only to discover some other bloody muscle desides to give up.

Funny you should say doom and gloom, my family call me that. But ofcourse they don't know what it's like being trapped in our bodies.

My hell journey started 20 months ago with my legs, do you fancy swapping your legs for my arms ? We might make a workable human being 😬.

I honestly don't know how we get through a day. Have you got any family around you for some support ? You can always have a chat with me, there's nothing like chatting to fellow suffering souls .
 
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MJT

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Robin, your recent post gave a much clearer picture. Do you have palliative care? That might be an option. They drove us nuts with my mother-in-law, but if my hair was in my eyes, I'd be waiting by the door for them to come by and push it back.
 

Sammy88

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Als/mnd plays havoc with our emotions. It's also affected my sense of humour. My once dry humour is now quite brutal at times.

The do gooders say enjoy each day but how when you are grieving for the loss of physical functions, simple inability to achieve a mundane ordinary task, which kicks off your bad mood. Frustrating yes, hell really.

Robin it definitely sounds like you need some sort of assistance in your everyday life. Have you reached out for any help ? . I know you want out and who can blame you. I have felt like ending it many times.

There are a number of ways I believe/ heard that you can exert choices and some control towards the end of life. For example which interventions you will except, like a peg or breathing equipment.

For now how about sharing your thoughts and life experiences with us in this forum. Please ask for some daily help at home to.
 

ReginaS

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Hi Robin, my PALS who had decided against a feeding tube lived through not being able to eat or drink due to advanced ALS and it was rough until he was able to go. There were stretches of times when he was really miserable. He would look at me in the morning and was disappointed that he had not died in the night. It also lasted longer than anyone including hospice and Drs expected. If you decide you want to go this path I hope you have good advise, good care and people by your side who can help and hold your hand until it is over. Truly wish you comfort in this phase of life. If hospice can give you supporting meds it should hopefully be ok.

You probably know: Depending in what state you are in, hospice will only administer morphine and ativan for shortness of breath and pain. They are legally not allowed to give it to someone who decides to stop eating and drinking. Though there are other states where this is different.

I am supporting a friend (98 in about a month - not ALS - 'just' old age) who definitely has shortness of breath, a failing heart and is on oxygen 24hrs per day, she has much dementia and is really bored. Instead of letting her go, assisted by morphine and ativan (lorazepam), hospice supports the oxygen treatments, treatments with albuterol and sertraline.

This has been going on for a few years now and with increased doses of sertraline she is hanging in there, is willing to let the staff change her - without it she would have serious shortness of breath, much rattling, no desire to live and little cooperation. For some reason hospice will increase the doses whenever her "real" state shines through the surface of medicated awareness/being and they won't switch her to morphine and ativan. I talked to them and told them that this is not in what my friend had expressed to me about her end of life (I am PoA) but at least right now I am not able to change anything. I am also not a physician but when I talked to them they did not have convincing arguments why this needed to be so.
 
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lgelb

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Just a reminder that there is no requirement to call in hospice when someone is ready to go. Most docs, including a PCP, and many NPs and PAs can write meds that CALS can use to smooth out/hasten (the latter generally in a don't ask/don't tell framework) the end. The prompt is, "S/he now has air hunger."

I am sorry to hear about your friend, Regina. If you have already taken things up the food chain with hospice, the provider that initially wrote the hospice order might be willing to intervene given a suggestion that you might be filing a complaint with the State Department of Health. If you have PoA, you are also able to change or forego hospices.

Best,
Laurie
 
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