I give up.

[lisaohgee]

I've talked to my stepdad about getting hospice. He said he and my mom talk about it everyday, but she won't do it, and he won't get it even though he knows they both need it desperately. He won't do it if she doesn't want it, even though she's in pain, not sleeping, and needs it so badly.

She is finally getting nutrition through her feeding tube, once a day at least. I noticed her lower lip isn't moving much anymore The only thing she has left to move is her head slightly, her eyes, and her lips.

It's terrible seeing her suffer so much and being unwilling to ease her pain in anyway. I can't stand it much longer.

I'm sorry to whine. I don't know what else to do.

 

[SMillheiser]

Lisa,

At the very least, your dad is going to periodically need time for himself to rest and recharge. Maybe we can help.

Stu
ALS Guardian Angels
949-233-3045

 

[notgivnup]

Oh lisaohgee, so sorry there is such a struggle for your mom and dad. Could you maybe tell your mom it is not for her but for your dad as He is the one that needs the help with her. Maybe she can accept it better if she knows it will help her husband. Just a thought. I will be Praying she will see that help can make a world of difference for you all. Be strong and dont give up, Praying for you also...(((HUGS)))

 

[notme]

HI

I know Hospice would be of some great help, but if they won't consider it--there are some things you might be able to talk her into.

First, contact the doctor (or ask dad to) and see if they can prescribe some pain medication for her if she's in pain. They will be sure to give a safe dosage--and it can help with pain as well as any air hunger feelings. They might be able to find a medication that can help with pain and with sleep.

Is there a problem with the PEG that is causing her to only be able to be nourished once per day? Is she getting plenty of liquids so she doesn't get dehydrated?

Is there a reason she doesn't want Hospice? Sometimes it's simply because it's looked at as 'giving up' rather than as much needed support. Perhaps someone can explain to her that it's needed for DAD?

I'm so sorry--I wish there was an easy answer. Perhaps they can take Stu up on his offer for some Respite Care.

 

[lisaohgee]

She refuses to have more than one feeding a day through the tube. This is progress, as before she wouldn't use it at all. A doctor was called in, but since it's someone that has NO IDEA about ALS, it's been two weeks and they still have not gotten the prescription to the pharmacy (their insurance is NOT the best and choices of doctors are extremely limited).

She doesn't want hospice because she thinks it is "giving up". I will try explaining to her it's fro my stepdad, but I don't think it will matter because all she wants is him all the time. I feel terrible for him. The other day my husband was helping him with some stuff outside, and he kept offering to do it, and my stepdad said no, he was just so happy to be outside doing something.

She's too proud for her own good. She also has cognitive impairment.

 

[lisaohgee]

There's no problem with the PEG -- she just won't use it more than that. It's amazing that although she can barely move or speak, my stepdad still won't do things if she says no. This is progress since she recently wouldn't use it all.

A doctor has come in, but because their insurance is not great, the choices of doctors is limited. The doctor is an idiot and for TWO WEEKS still hasn't sent in the prescription to the pharmacy -- apparently, the kind of medicine it is requires a written prescription.

She doesn't want hospice because I think she thinks it means the end (which it is, really). I could try to tell her it's for my stepdad, but she wants him all the time and doesn't seem to want anyone else. SHe's okay with her caregiver that's there while my stepdad is at work, but that's it.

 

[Sammantha]

It sounds like she knows what she wants and needs and that maybe her food/living arrangements are the few things left she can control......I think that you should look into getting a nurse sitter so you and your dad can get some free time...and recharge.

 

[notme]

HI

If there are cognitive issues--I'm assuming you're thinking FTD? Then it's time for someone else to take over control and follow the wishes she had in place when first diagnosed. Heck, for that matter--does she have to know that hospice IS Hospice? Can't they just be 'help'?

If she's chosen little nourishment with a sound mind--then, that's her choice and it should be honored, I'm afraid.

As for insurance--this is Medicare change time--anyone on Medicare can change plans from now til Dec 7th. United Healthcare has a great Medicare Supplemental plan--and is accepted almost everywhere, I believe. I had to change to it to get better coverage. (I'm assuming she has medicare--as she's eligible with ALS for it)

Wish I could offer more in the way of support.

 

[Katie C]

I agree about United Healthcare's supplemental plan. My mom had it and her hospice care was AWESOME! We had 24/7 care the last 3 weeks of her life, which given the situation with Glen at the time, was amazing!