Not sure what to do.

[lisaohgee]

As I've posted before, I think my mom is ready for hospice. The Social Worker who visited her agreed, however, my mom won't accept it. She is paralyzed from the neck down, has barely any speech left, and can barely eat anymore. She is getting more and more tired during the day, which I suspect is from the fact her breathing is probably also deteriorating.

She's very depressed, but she refuses to take anti-depressants. She refuses to go to the doctor, or use any equipment or do anything that will help prolong her life and or make life right now easier. She's basically given up.

Now, if she's decided she doesn't want to prolong the inevitable, I am fine with that. She is miserable trapped in a body that doesn't work, and I am not selfish enough to want her to stick around for my own personal wishes. I also already feel I've lost her in a sense.

I do, however, think she should get hospice because it will help make her comfortable. I don't know if she understands that. She and my stepdad are so against any additional help coming in (my mom has a home care helper during the day while my stepdad is at work). I realize that might be because they don't want anyone interfering on the little time they have left, but I really think hospice is necessary at this point. I know theres no way to tell how long she has left, but I feel that she's nearing the end.

I don't really know if there's something I should do.

 

[Chase_Corin]

Hospice dosn't mean what people think it means It dosn't mean that your restricted to a bed or chair with nobody interacting with you till you pass on. It is so much different from that It can be Physical, Emotional, Spiritual and help your mother's depression without medication.

I know my dad dreads going into pallative or hospice care and I had to explain to him what a modern Hospice is like. Because when he was young going to the hospice was kinda like going to the looney bin. It had negative conotations surrounding it.

In my eyes a hospice is a place that terminally ill people go where they can recieve care that is structured solely based on their needs. In a home invironment you might not have everything set up with lifts and wheel chair access that a hospice has.

I am sure your parents want to spend as much time together as possible but a hospice can make that time 'quality time' where your father is not worrying about moving her, if she is getting propper nutrition or bathing her without hurting her. They would be able to spend time enjoying each other's company. I know somtimes it's the caregiver that dosn't want to give up control too because nobody can care for your loved one like you can.

Maybe the social worker or a worker from the hospice could come in and talk to her and your father. Get them to brainstorm about questions they want answered. And maybe ask your parents what about the hospice scares them, that might get you more answers. Just be patient with them but if they are still against going to the hospice there isn't much you can do about it. In the end it is your mother's choice.

 

[tmasters]

From your description, it sounds to me like she's ready for hospice, too.

I sense a lack of communication. You need to talk with her and explain what hospice is, and then find out WHY she doesn't want it. It sounds like you're guessing her reasons.

-Tom

 

[notme]

Unfortunately for your peace of mind; there is not a lot you can do to force her to get hospice to come in. What does your step-dad think? Has she any type of medical power of attorney in place? I'm sure she is depressed--but is she still legally competent? That's a tough call for you to her husband to make--but you might need to.

Of course you don't want to prolong her suffering--especially if she doesn't want any vents or things like that. But, there are things that can make her time much easier--breathing assistance via bi-pap. Medications to deal with any pain issues she might have.

If she's still communicating--can she tell you why she doesn't want hospice? Perhaps she thinks it's just kind of a 'living storage facility'. Maybe she doesn't understand that it's so much more than that!

You don't say if you're trying to get her to a hospice facility or home hospice. Is she aware that there are both options available to her? Perhaps the social worker can explain the ends and outs to her.

But, ultimately, if she's mentally sound--the choice is hers. Since she's remarried--her medical care decisions would probably fall on the spouse.

Can you contact the ALSA for assistance?

 

[lisaohgee]

She cannot really speak any more. But she's made it clear she doesn't want any additional help.

I do think they aren't realizing what hospice is. It is very difficult for me to talk to my mom alone, my stepdad is always tehre, but I think I am going to ask him if I can talk privately with my mom and try to explain it to her.

I don't want to force her, but I want her to understand it might help at least make her comfortable.

 

[abbas child]

Maybe if you go to the office and pick up informational materials you can give them to your stepdad and mother to read, and they can learn. Hospice is a scary thought if you don't want to die and it's seen as "help when you're dying". As you know, it's a lot more than that. Rather than do the talking, consider dropping off materials with a word of encouragement to both or either of them.

I'm on hospice now--and I think of it as an insurance policy that I won't have to be uncomfortable later on. Meanwhile, they do give showers--Bliss. Or perhaps, bedbaths for your mom.

 

[Jellycat]

Tough spot you find youself in. I can only echo what others have said, especially since hospice operates a small bit differently over here. Still, I suspect the basics are the same: comfort & enhancing the life of a person with a life limiting disease. I agree with trying to inform your mom & step-dad of what hospice is really about. If ultimately, after all efforts, your mom makes a choice not to involve hospice, perhaps you could see it as her exercising her own independence & choice. After all als takes a fair bit of that but the person is still there, able to make their own choices. I wish you well in your search for the best for your mom.