I now no longer sleep..

[GilWest]

Mom is in the end stages now. We have what is equivalent to a home ICU. Between turning her every 2-3 hours and cleaning up her 2AM BM. I am getting very little sleep. I tried to hire help, but after a few hours time seeing what I do, the said, "nada," and went on their way. Mom has a morphine CADD pump, but that isn't controlling her pain, if it is actually pain and not some sort of dementia. She has the best equipment to make her comfortable, but just isn't ready to let go. I ask about hospice and she shakes her head no, then proceeds to grimace. The reason I am unsure about the true level of pain is that her nightly anxiety and Ambien knocks her out for 10 hours. I still cannot sleep, because I have to turn her several times. I will say that while this is the busiest I have ever been, it is the most rewarding job I have ever done. Much more satisfying than my real job. Palliative care is coming by and I am
Going to see what they suggest we can tweak to keep her comfortable. One of her doctor said that it will get to the point to where she will need so much Meds that she will sleep most of the time and that we should then call hospice and disconnect the vent. I tend to agree, because to is no kind of life. With mom, the Trach and eventual vent was a mistake.

Ok, how do you deal with your PALS pain, and have any of you ever dealt with a CADD pump and morphine?

 

[lgelb]

Why is she on morphine if no one is sure about her pain? Didn't you say she had pressure ulcers? Are they the cause of pain? Do you know for sure that w/o the morphine she would be in severe pain? Have you tried tapering it down? I have never heard of MS being needed for pain long-term in ALS but rather for air hunger. But she has a vent, so that can't be the indication. If her ulcer(s) are really so severe that she needs infused MS, doesn't seem likely they will get that much better very soon.

The reason I ask is that between morphine, +/- pain and Ambien, she may not really be in a position to answer the questions you are asking. I wouldn't ask about abstractions like hospice. I would ask her if she wants to keep living this way. I would ask if she can give you permission to let her go under certain circumstances (that you outline). What kind of legal responsibility has she delegated to you? If you have her HC PoA, it is really a question of how you can best illuminate/support her wishes.

 

[cheerleader]

Oh Gil, I am so sorry. Know it is rewarding to care for her and show her your love - but equally as hard to watch her continue to decline. Tonight I am grateful that when I left my husband's bedside Friday that he wasn't suffering and I thought all was well. I didn't have to watch him in pain or on heavy medications being kept alive by machines. He died peacefully in his sleep. So I am grateful not to have had to see the depths of pain and indignities you are watching. You are in my thoughts tonight. Hope it is over soon so you can rest.

 

[dalvin]

Prayers for you and your family

 

[GilWest]

Why is she on morphine if no one is sure about her pain? Didn't you say she had pressure ulcers? Are they the cause of pain? Do you know for sure that w/o the morphine she would be in severe pain? Have you tried tapering it down? I have never heard of MS being needed for pain long-term in ALS but rather for air hunger. But she has a vent, so that can't be the indication. If her ulcer(s) are really so severe that she needs infused MS, doesn't seem likely they will get that much better very soon.

The reason I ask is that between morphine, +/- pain and Ambien, she may not really be in a position to answer the questions you are asking. I wouldn't ask about abstractions like hospice. I would ask her if she wants to keep living this way. I would ask if she can give you permission to let her go under certain circumstances (that you outline). What kind of legal responsibility has she delegated to you? If you have her HC PoA, it is really a question of how you can best illuminate/support her wishes.

The morphine is for the pressure ulcers. I do not appreciate the second guesses. Are you her doctor. One thing that has always pissed me off about this forum is the second guessing of people who are in nearly impossible situations. I trust the care she was given and I feel her doctors had her best interests in mind. Have you see her pressure ulcer? I have. In face I have been knuckle deep in it only yesterday changing a soaked dressing because the wound vac came off and had to put a temporary dressing on it. Going to the doctor all the time does not give you the right to second guess and discuss what is "indicated". And then I read you are an expert on hospice? Her hospice/palliative care contact actually started and ran a respiratory hospital. I think her decisions and advice are qualified enough. In fact I took mom to an ALS clinic. Probably near the bottom of the list of care providers when it came to actual care and trying to help Mom.

 

[GilWest]

Oh Gil, I am so sorry. Know it is rewarding to care for her and show her your love - but equally as hard to watch her continue to decline. Tonight I am grateful that when I left my husband's bedside Friday that he wasn't suffering and I thought all was well. I didn't have to watch him in pain or on heavy medications being kept alive by machines. He died peacefully in his sleep. So I am grateful not to have had to see the depths of pain and indignities you are watching. You are in my thoughts tonight. Hope it is over soon so you can rest.

I appreciate the support. She did not want ventilation until the time came. I honor her wishes. See, we were told that she would pass away peacefully in her sleep and I am thankful for you that your PALS did. Mom's near passing was neither peaceful or quiet. mom had aspiration pneumonia and was dying struggling for air with white foam filling the bipap mask the hospital had her on. There is more to the story of that episode, but I am afraid the Internet docs will chime in.

 

[GilWest]

Why is she on morphine if no one is sure about her pain? Didn't you say she had pressure ulcers? Are they the cause of pain? Do you know for sure that w/o the morphine she would be in severe pain? Have you tried tapering it down? I have never heard of MS being needed for pain long-term in ALS but rather for air hunger. But she has a vent, so that can't be the indication. If her ulcer(s) are really so severe that she needs infused MS, doesn't seem likely they will get that much better very soon.

The reason I ask is that between morphine, +/- pain and Ambien, she may not really be in a position to answer the questions you are asking. I wouldn't ask about abstractions like hospice. I would ask her if she wants to keep living this way. I would ask if she can give you permission to let her go under certain circumstances (that you outline). What kind of legal responsibility has she delegated to you? If you have her HC PoA, it is really a question of how you can best illuminate/support her wishes.

And further more seeing her terrified and silently screaming several hours a day would make me dump napalm on myself just to get it to stop, so if morphine and Ambien can help her stop, I'll take it. I have been told that the pressure ulcer is probably excruciating, but due to her anatomy and previous other disorders, it was probably unavoidable.

 

[Grumpy'sWife]

Gil, I am so sorry and wish I had words of wisdom. All I can say is she is lucky to have you and Grumpy and I will be praying and thinking of you.
Hugs,
~Kaye

 

[lgelb]

Gil,
I do understand, better than you know, the desire to avoid suffering. And have acted on it.
I'm not clear on whether you or her consider her to be suffering at this very moment, with the morphine. It sounds like you do, at least.
If she is suffering and doesn't know it, that's what I meant about her not being clear.
If she is suffering and does, I'd suggest that simple question -- is this how you want to go on, is this too much, is it time to go, however you and she talk.

The point I was making was simply, you needn't wait till nature takes its course just because you didn't before, or wait for some arbitrary number of hrs sleeping per day to bring things to a close. No one is suggesting you should or shouldn't. But you do have the choice.

 

[affected]

Gil I'm so sorry it has come to this awful point where your mum is in so much pain.

We are all in pain here, and sometimes I know that with text it's hard to say what we mean, and sometimes we misinterpret questions so may not answer as well as was wanted. I also know that I find it hard to keep the full details of each person in my poor head, so sometimes have to ask questions back, when the details have been given earlier but I've forgotten some of them.

I believe we strive to support each other completely, but we do that by trying to answer questions from the experience we each had, and as we know ALS just isn't the same for each person.

I hadn't answered here as I just didn't know how to answer your question. When Chris came to the end stage I was able to keep him very comfortable and out of panic. He had the beginning of a bed sore, but nothing like what you mum has, so the meds I was giving were able to keep his pain at bay. I had a huge fear that he was going to develop a full ulcer if he went on much longer, I know I was grateful he was spared that.

I so wish there were good answers. I am thinking of you and hoping you can get your mum comfortable enough to achieve a peaceful passing for both her and yourself.

hugs

 

[Nuts]

Gil, I'm so sorry for what you are facing. It is unimaginable to watch what your mom is experiencing, but the exhaustion you must be feeling on top of that makes things soooo much harder. It seems that we all here have either already been or will be faced with excrutiating choices. Having not reached your stage of our journey, I have no advice to give, but my thoughts and prayers are with you.

 

[Janie H]

so sorry for the pain, prayers from SC

Janie

 

[gooseberry]

Gil, I am.saying a.prayer for you and your mom. Do what you think is best for her with the information you have and dont.second.guess it. You are doing a wonderful compassionate thing trying to honor her wishes and get good care in a very difficult situation. Hugs.

 

[affected]

how are you and your mum doing Gil?

 

[Santa joe]

My sweet Gil, you are living my life and I understand EXACTLY what you are going thru.........there comes a time when having your Pals on a vent becomes overwhelming. Watching them exist and not living on a vent is so hard. Joe had a horrible bed sore that caused him so much pain that I also started giving him morphine. His doctor called in hospice a month before he passed mainly to get me help. Try to explain to your mom that this is not the end but a way to receive much needed help. In reality, a CNA to bath him 3 times a week and the meds were paid for. I did find out that hospice would provide a nurse 24/7 for 5 days. I didn't get a chance to take advantage of that service.

Joe was so afraid to leave us - I was willing to take him off the vent but it didn't come down to that. We think he had a heart attack as he passed away on the vent. Loved him so much and didn't want him to go but loved him more for it to be over.

You have validated my view on being vented........please pm me if I can help you in any way.

Debbie