Nearing end?

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Missgranma

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My sister is completely paralyzed now except for eyes and still able to smile beautifully. She indicated to me she could feel the CO2 building up in her body despite ventilator use (bipap). She thinks the end is near and wanted to discuss some affairs issues. She wants hospice but her husband is reluctant to give up the caregivers from a home care agency they have because they are familiar. I believe it is time to make this transition but am not sure how to convince my bro in law that this is what my sister wants. Honestly I think the compassion and help a hospice care could have is what we all need now. The long goodbye is close to ending (since Sept 2019) and we need some help.
 

lgelb

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I'm so sorry. If their agency also provides hospice services, it could be arranged to keep the same caregivers. If not, I would ask them what hospice agency in your network they would recommend. You can interview them without your BIL for starters to see if they seem simpatico. You will want to be explicit about quantity vs. quality of life as your sister defines it.

If they seem like a fit, you could approach him and ask him to meet with them, reminding him gently that it is still about her.

Just a caution that hospice agencies do differ, and you may not have one in your area that you bond with. If so, and if all of you like the current caregivers, you can likely get the equivalent of hospice with some discussion and some out of pocket funding.

Again, I am very sorry. Ask us anything. --Laurie
 

ALSquestions

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My heart breaks for you. The end is near for my mother, and it’s agonizing. I don’t want to forever lose the feel of her hand in mine, yet I don’t want her to hang on if she is ready.

I was just about to suggest interviewing hospice agencies when I saw Laurie’s response come in. In my experience, with hospice for my father, who had cancer, there was a starker (though positive) contrast between the treatment model and the hospice model. Though my experience with the ALS treatment model for my mother is very limited (she received the diagnosis in Jan, and had the dx confirmed along with a hospice referral last week), from my understanding of ALS, the shift in gears might be smoother and, again as Laurie has said, maybe something your current agency can accommodate in some fashion.

I would also recommend taking lots of pictures of your sister’s beautiful smile, her hands, your hand holding hers, etc. You might also reach out to local hospice agencies, regardless of the decision your sister makes, to ask if they can support you and your BIL and other family members. Though they won’t go so far as to provide respite care if your sister isn’t a client, they may offer counseling services and other benefits on a sliding scale.
 

lgelb

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ALSQuestions, be sure to tell your mom that you are ready when she is. It helps.
I'm sorry that she's near the end, but glad she has you, for the whole ride.

Best,
Laurie
 

nona

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I'm so sorry that your sister is nearing this point. For what it's worth, the hospice agency I use did not replace my homecare team.
 

Fusia

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If you are paying out of pocket for the current caregivers from a home care agency, I don't see why you would need to give them up (although that may vary from state to state and local regulations). Hospice would really just be a supplement to them. I know one of my current caregivers had also been caring for another client - when he went on hospice recently, she still continued to provide care for him. He continued to pay out of pocket for her hours while on hospice.
 

lgelb

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I may have misunderstood -- I thought the OP, Miss, wanted something different in terms of services and that is why she was asking re hospice.

Essentially, for reference, the difference between home health and hospice are that Medicare will actually pay for some (variable, depending on the agency) "custodial" care at the end of life, whereas the home health benefit is around medically-necessary service. In theory, the focus of hospice is a good passage.

Another difference is once you are enrolled in hospice, the hospice agency assumes financial responsibility for ALS-related expenses (Medicare retains responsibility for other medical expenses), which are reimbursed by a picayune monthly payment. Thus, major equipment will not be funded by hospice, so you want to get all that beforehand. But if something comes up, you can go in and out of hospice from a paperwork perspective.
 

Missgranma

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Thank you for your response. We talked about some options this week and I think BIL has some people he will call. It's such a hard thing because he is her main "lifter n chief" and she knows its hard on him yet he resents being criticized for not moving quick enough. I love my sister but I also love my BIL sometimes I feel my sister is being too harsh with him, Like I said when she first got diagnosed was that people's personalities don't change just cause you got sick. Anyway im trying to stay out of it. Since she got this Toby talking computer shes able to get her feelings known which is actually more usual but also mote distressing to me.
 

Missgranma

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Thank you so much for your compassion. Im finding the responses I get extremely helpful during this difficult time
 

Missgranma

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My cousins wife (veteran RN)and another cousin are at my sisters now helping my brother in law with Michele's "transition". She is officially getting hospice care and after a difficult week of painful spasms, horrible anxiety and air hunger...she is resting comfortably . Even though I know she will probably not be back and up again using her Toby...I feel relief that this 2 year nightmare is coming to an end. I have never lost anyone this near and dear. My baby sister was a beautiful sister and also a great friend and I am devastated at the cruel and inexplicable way of this disease.
It feels like yesterday we were talking about how she probably has the "long" kind of ALS. It was only 1 and one half plus years of a March through her body. I dont think there is a long or short kind. It is just painful whenever they slip away.
 

lgelb

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Wishing Michele, you, and everyone peace...
 

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thinking of you and your family and hoping that a peaceful ending is achieved - it can be done no matter how awful this disease is 💚
 

nona

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Sending love and strength to your family. Sisters are the best and she will be with you always.
 

blitzc

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Prayers for you, your family, and your sister. Keep those wonderful memories with her flowing through your head and heart. 💕
 

EiLL

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Regarding Trilogy 100 Bipap. I am unable to locate common alarms that will signal with respiratory failure from the Triology website. I would like to know in order to allay any increased stress to her husband and family. I am Leslie's cousin (the veteran RN mentioned above). Thank you to anyone that is more familiar with this ventilator. My experience has only been with invasive vents in the ICU.
 
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